Noticeboard

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Welcome to our noticeboard, an area of the site which is dedicated to putting people in touch with people. We get emails from all over the world and it's difficult to provide much in the way of support - apart from a sympathetic ear - for people living so far from the United Kingdom. Here's your chance to talk to someone nearer to home. If you want to post a message on the board, just fill out our contact form, or send an email to support@hmesg.co.uk.

Whilst reading our website, please bear in mind that the severity of Hereditary Multiple Exostoses varies from person to person. As a Support Group we are in contact with HME sufferers who have lived long and active lives without serious problems, those who have had severe problems and many in between. Problems you may read about in the personal accounts on the website are not inevitable for everyone, but it can be helpful to be aware of them.

 

From Sarah Chekroud
Manchester, United Kingdom, 11th Febuary 2008
Hi. My 13yr old son has a valgus deformity of the right knee with large lumps above and below. Our consultant is know considering correcting the deformity using plates. I was wondering what other people's experiences have been of correcting this deformity.
Email - sarahchekroud@hotmail.com

 

From Raj Patel
Ilkeston, United Kingdom, 10th Febuary 2008
Hi, my name is Raj and I'm a long time sufferer of HME. I have had 5 operations in total to treat this condition. I have had 4 lumps removed from my legs and one from my lower back. This was mainly due to the discomfort caused eith with nerves being trapped or bruising caused by knocking into things. The operations were carried out when I was 8 and 12 years old with varying degrees of success. The lumps that were removed from my legs grew back in the exact same location. When I was young blood samples were taken from my self and my family and relatives and sent to Texas so that further studies culd be carried out. Apparently they pinpointed the cause of this condition being due to defective chromosones 8 and 11 - my knowledge of genetics is limited. In addition to these lumps I have many more. When I was a kid me myself and my cousin would play a "game" to count and see who had the most lumps. I also have an obvious bowing of my right arm and legs.
Email - baggio4378@ntlworld.com

 

From Linzi
Glasgow, Scotland, United Kingdom, 29th January 2008
Hi, my son is now eight he was diagnosed with HME three years ago which started with a lump on his finger,he now has them on most fingers,knees,ankles,wrist and am not sure if he has rib lumps also as he seems to be getting pain in that area.The rest do not bother him except for an ankle one at the moment,he is due to see his consultant in March about it. I had no idea about this condition as it is off his father which we do not have contact with so it was great when i found this website. Email - linzi-crerar@hotmail.co.uk

 

From Sonia
Carlisle, United Kingdom, 12th January 2008
Hi I have a seven year old daughter with this condition. She has them on every long bone so far and at the moment in pain a lot with the ones above her knees. I found them on her when she was 2 years old and they have grown rapidly since then we have been left with yearly apointments that keep getting changed and it is begining to get really frustrating as she is in pain. Email - chelseabethany@hotmail.co.uk

 

From Sarah
Coventry, United Kingdom, 09th January 2008
I am 31yrs old i have had hme for about 20 yrs.I got it passed down to me through my fathers family i have 1 sister and a brother who have hme.I also have 2 neices and many cousins who have it and have passed it on to their children.I have had four operations and i am on the waiting list to have my fifth operation i have had them all just on my legs.I have seen 4 different consultants and have been to 4 different hospitals to have them removed.I only found out 3 yrs ago what it was called we just used call them lumps of bone.
Email - sarah.davenport70@ntlworld.com

 

From Joanne Veitch
Wokingham, Berkshire, United Kingdom, 20th December 2007
Our 2 year old son has inherited HME from his father. He was diagnosed with HME at 11 months. He is due another check up in January. When I was pregnant, we had our 12 week scan, the results of which came up extremely high for our son possible having a 'Syndrome'. We had an amnio at 18 weeks and he was absolutely fine.I can't help but wonder given how HME affects genes, whether it was because he had/has HME that this genetic nuchal fold scan came up so high for us. Has anyone else been in a similar situation?
Email - viejoanne@tiscali.co.uk

 

From Mertxe
Bilbao, Spain, 18th December 2007
Hello everyone!!! I'm the mother of a child with MHE. She (4 years old) is the only one in our family with this disorder, that was diagnosed at age 3. She has several bumps, but doen´t have any problem yet (no pain, good mobility). I would like to take contact with other parents of children with MHE in the same situation (without familiar antecedents). Email - mertxebargo@hotmail.com

 

From Kathleen Gentile
East Setauket, New York, United States, 19th September 2007
My grandson, zachary was diagnosed with hme at around the age of 2 1/2 years old. We first noticed the lump on his right knee. We are now finding them on his back, ribs, wrist and shoulder. He also has been diagnosed with what is thought to be cvs (cyclical vomiting syndrom), which is also called abdominal migranes. This poor little guy, now age 3, has vomiting episodes between every 6-9 weeks. There is no familial history of either of these 2 afflictions anywhere in any of the families. Is there anyone in the long island, new york, usa, area who is familiar with either of these afflictions? Does anyone know of any support groups in this area? Thank all of you so much for a most informative web site. A lot of what i just read really helped me to understand more about hme. I look forward to hearing from anyone out there. In the mean time, your united kingdom web site is being put into my favorites.My email is K222ATRINA@AOL.COM

 

From Becky and Tom
Helston, United Kingdom, 29th August 2007
We have just had the diagnosis of HME for our son aged 2yrs 9 months. He had a lump on his finger aged 9 months and a lump on his ribs aged 2 and I was sent away. Only after pushing about his finnger have we had x rays and a diagnosis. He is being operated on next month - on his finger which is growing badly in the wrong direction. I am devasted but Dad has more perspective on things. Am very annoyed with the attitude of doctors and despite a diagnosis have been told nothing beyond the name. Can't find it in either family although my husband does have some unexplained bumps on him! It would be great to speak to others in the same situation - long term prognosis seems very varied. My email is TandRCalvert@aol.com.

 

From Jeni Brus
Galashiels, United Kingdom, 12th August 2007
Hello. My name is Jeni Brus and my daughter was diagnosed with HME when she was two (six months ago). The condition is not hereditary in Jenna's case and she has two older sisters who are unaffected by the condition. She has several lumps, none of which yet seem to be causing her pain, although we have noticed that she is less agile than children the same age and trips up quite a lot. We would be happy to receive any information about the condition and what we can expect for the future. We would particularly like to hear from people in Scotland, or in our area, with the condition. My email is tbrus@tbrus.plus.com.

 

From Jinae di Nisci
london, United Kingdom, 5th August 2007
I have recently (at age 45!) atrted growing massive lumps on both knees. My gp says he is positive it is exostosis and also remarked that it's quite bizarre because of my age. X-rays however revealed nothing out of the ordinary leading my gp to believe thayare still in cartilage phase and have not calcified into bone yet. Has anyone else had this experience and does anyone know how long it takes to turn to bone? I'm a bit scared i may not be able to walk soon as the lumps are growing on my knees very rapidly and already cause limited mobility of the joint. My email is jayjaye@lycos.co.uk.

 

From John H. Wakefield
Pensacola, Florida, United States, 24th July 2007
I have had diaphyseal aclasia (multiple osteochondramatosis)to my knowledge for over 20 years. I am extremely interested in contacting others with the same condition in the United States, particularly in the Southern United States. I am also curious as to the genetic make-up of hereditability of this condition, i.e., whether it is a dominant or recessive expression. My email is jwakef@cox.net.

 

From Steph Montgomerie
Swadlincote, United Kingdom, 1st July 2007
I have HME And my daughter has inherited it from me, although she has it a lot more serious than me. Kerrie is 12 and we are currently awaiting surgery to have her forearm lenghtened and straightened. Her elbow has come out of joint and so she is in a lot of pain a lot of the time. We have been told that she will need a fixator for about 9 months. Kerrie is very distressed at this and I would like to give her help and support so can anyone who has been through this give me any help or advice!? Amongst other things one of Kerrie's big issues is going to school and the reaction of others - she has just started high school. She also has a lot of extra bits (as we fondly call them) on her knees and ankles which can also cause her pain. Any advice would be gratefully received. Thanks in anticipation.
Steph My email is montie68@tiscali.co.uk.

 

From Anthony Logan
Grimsby, United Kingdom, 27th June 2007
Hi , I knew i had HME since i was old enough 2 see.. they are quite visable.. most docters ive ever been to see are more fasinated about them than anything its like they have never seen it before. Wish i found them interesting, i go the gym 5 nights a week and train hard, but i am unable to any excercise on my legs at all since i was 16, i am now turning 20 and hating HME...
Are docters/surgeous more supportive in other citys?
Regards.
Logan . My email is anthony@asplocate.com.

 

From Nicola
Croydon, United Kingdom, 8th June 2007
I have HME, it runs in the family. I have also just been diagnosed with CFS(ME), which my uncle was diagnosed with a few years ago (he also has HME). Studies show that like HME, CFS also has a genetic link. Does anyone else have other illnesses which are genetically related as well as HME? My email is I_Katana2005@yahoo.co.uk.

 

From Ruth
Exeter, United Kingdom, 2nd June 2007
Hi, I have had a number of operations in the past to remove lumps from my knee, wrist, collar bone and rib. the first rib operation they only sliced off the lump but I now have a lump on my 6th rib of which they have decided the best action will be to remove the whole rib, I wondered if anyone had had this done? I am having it in a couple of weeks and finding the whole prospect rather scary!
Thanks, I would love to hear from you. My email is southwest@hotmail.com.

 

From Nicola
London, United Kingdom, 28th March 2007
I was wondering if any of you have noticed an increase in other conditions in those who have HME, Myself and my uncle both have HME and also have CFS (Chronic Fatigue Syndrome or ME), which also has a genetic susceptibility link.
Please let me know if there is anyone else out there battling more than one condition.
Thanks My email is I_Katana2005@yahoo.co.uk.

 

From Victoria Crabtree
West Yorkshire, United Kingdom, 8th March 2007
Hi there
I am 30 years old and was diagnosed when I was about 9, I had an operation on both knees to remove bones when I was 14 and have not had any follow up since then. However, I have a rather large lump at the top of my right arm (this was the one that prompted the diagnosis) I have recently been having increased amounts of pain and have visited the consulant this week. I have had an x-ray that looked very cloudy compared to the one I had when I was younger and wondered if anyone could give me any advice. I have put on quite a lot of weight and wondered if the cloudyness was to do with that? I am fearing the worst and my consultant has requested an urgent MRI but he did not say that he thought anything was wrong with the x-ray. Any advice would be appreciated. Thanks Victoria My email is vicstercrabtree@aol.com.

 

From Darren and Myrna
United Kingdom, 16th February 2007
Hi, this is such a help. I'm hoping someone will be able to respond with information on rib bumps. The surgeon we saw is wanting to just cut that portion of the rib completely out. Is this standard procedure or could he simply cut the bump off the rib? You're all so wonderful. Thanks in advance for your support. Myrna. My email is dlmkc@sbcglobal.net.

 

From Annica
Reading, United Kingdom, 4th February 2007
Hi there everyone. My partner has HME. He had several operations in his late teens to have exostoses removed but there are still several left. Now in his late thirties, he is starting to get more pain on top of the rest of his problems linked with HME. The main problems are in his legs/hip and back. That's what we thought anyway... But after the latest appointment with the doctors (we have been trying for two years to get help but have only been transferred between different specialists) we were told he had to have a CT scan of the chest. We are due to see the doctor shortly to review the results. His ribs are just a big "mess" - the ribs are grown together and it is apparently difficult to remove exostoses in this area. Of course, this is making us very worried. Is there anyone else out there who has had problems with the chest/ribs? Also, has anyone got any good news regards insurance companies? At times like this, it's very difficult to get cover for HME. Best wishes to all of you. Annica and JoJo. My email is annica@pangbourne-on-thames.com.

 

From Mark Ashcraft
Desoto, Texas, United States, 17th December 2006
Does anyone know of disappearing exostoses? Two of mine have disappeared, one in the past couple of months which I'd had for 30 years. Any ideas? Please e-mail me if you've had these things "hit the road", so to speak. From what I know it's very rare. Please feel free to send me your comments or ideas. I live in the Dallas area and my email is mark-ashcraft@sbcglobal.net.

 

From Sarah
Middlesborough, United Kingdom, 20th November 2006
Me and my sister have HME and we have managed to cope fine, especially my sister. These extra bones don't seem to bother her and she had no operations so far. A lot of my family have HME and most of them have had ops. I have had three operations so far. The operations ease the pain so much, it's better than just trying to cope with the pain. My email is sarahsargeant@msn.com.

 

From Angela Connelly
Liverpool, United Kingdom, 8th November 2006
Hiya! Myself and my nine year old son have HME. I have had a large number of operations to remove these lumps and my son has had two operations. The only part of his body that does not have these "extra bones" as we call them is his skull. He is due to go into hospital on the 11th December to have surgery on both wrists. He is not coping at all with his condition and is very fed up with the constant pain and all the surgery he has to have. Has any body got any advice on how to help me help my son come to terms with his condition? He is at the age were he is asking "Why me?" My email is angconnelly06@aol.com.

 

From Paco Rodriguez
Madrid, Spain, 20th September 2006
Hola! We are a Support Group in Spain for families affected by HME and would like to hear from anyone in Spain who is affected by it to exchange information and experiences. The Spanish Support Group can be contacted by email at exostosisgrupo@yahoogroups.com or by telephone on +34 649 116 241. Cordial Greetings. My email is teixoro@yahoo.es.

 

From Ann Marie Smith
Airdrie, United Kingdom, 19th September 2006
Hi everyone. Six generations of my family have suffered with this condition. I was told to put up with it and that the lumps would stop growing when I do, but my last op was when I was 35. Even then they wouldn't listen and it was only when I insisted that they x-ray the knee that they found a large finger-like bone that was removed the following week. My two sisters have HME, my brother and I have passed it on to four of our five children, and my son has passed it on to two of his children. The youngest is only five and has lumps on his ribs as big as grapes. My daughter age 25 had a stroke when she was only seven and during an MRI, the doctors found out that she has lumps on her hip and knee. For the last few years she has suffered severe pain and was referred to the Monklands Hospital [Airdrie, Scotland] where she was told "they don't grow when you stop growing" and told to put up with it! We are asking for a second opinion. Many thanks for this wonderful site. My email is ams@hotmail.co.uk.

 

From a Concerned Mom
Canada, 25th July 2006
My 28 year old son has over 50 osteochondromas. We first noticed them when he was around three months of age and he had several on his ribs. He now has them throughout his body and has had several operations to remove the larger ones that were restricting mobility. I am concerned because he has been complaining of chest pain and his latest chest x-ray didn't show much, so the doctor seemed to brush it off as nothing out of the ordinary. Should I encourage him to go back and ask doctor for follow up. Has any one encountered a similar situation? Any advice would be of great help. My son rarely complains. His Dad has them as well and both of them rarely complain even when it is clear that they are suffering. My email is Bcrosby5251@aol.com.

 

From Christine Frost
Maidstone, United Kingdom, 23rd July 2006
I am 64 years old and was born with HME. In my younger days they didn't know anything about it so I want to ask two questions.
The doctors said it was to do with radiation, but my mother said she never had any x-rays while she was expecting me. However our house was bombed and she went round to see the damage.
People have said there might have been radiation in the bomb.
Could that have been the cause of me having HME as no one else in the family before have had it? I have passed it on to my two daughters, but not my son, and my granddaughter has it badly. So will it only go through the female generations? My email is frostd@pbworld.com.

(See our page What is Hereditary Multiple Exostosis (HME)? which explains that about 10% of affected people have no family history and that boys and girls have an equal chance of being affected.)

 

From Diana Pontin
Blackwood, United Kingdom, 21st June 2006
Hi! We took our 14 year old son to one of his appointments
at the hospital yesterday where we were told he would need another operation, this time on the hip. Is there anybody who has had this done? We are really worried as he will be
doing his GCSEs in the Spring next year. He has already had seven operations, the first when he was only a baby. My email is terry.pontin@talktalk.net.

 

From Mary Brown
Leeds, United Kingdom, 13th June 2006
Hello, I am writing because the son (early 20's) of a friend of mine has HME and has just undergone a very major operation. Although he has had lots of surgery in the past, he has taken longer to recover this time and has just been hit by the severity of his condition. He is asking big questions about his life and what he can do with it. At the moment his outlook is very bleak as he feels his future is one of more and more operations.  I would be very grateful to hear from anyone who has hit this 'wall' or their friends and family as I have run out of ideas of how to support them. Yours in hope, Mary. My email is spannarich@yahoo.co.uk.

From Paul Allan
United Kingdom, 2nd June 2006
Hello. Have just discovered this group when searching for information. Does anyone have any experience of having exostoses removed from the pelvis? I've had operations on knees, elbows and fingers, but now my doctor has said I should have the exostoses removed from my pelvis which is a much more serious operation. Any advice much appreciated. My email is paul_allan_1972@hotmail.co.uk.

 

From Stephen Fox
Leicester, United Kingdom, 23rd May 2006
I have HME. Are there any good doctors in the Midlands who specialise in it? My leg is really painful and I've had to stop work because of it. It's got so bad that I spend a lot of time in bed with pain killers. Thankfully it is only a few days a week that it's that painful. Most of the time it just hurts if I walk too much. My email is Phantomsteve35@hotmail.com.

 

From Andrea Z
Cordoba, Argentina, 19th May 2006
My name is Andrea. I am 33-year-old and from Argentina. I do have HME, also my two brothers, and my brother�s sons (a 6-year-old girl and a 3-year-old boy). HME comes from my father�s family. The kids have had no surgeries so far. I have had five exostoses removed in my life; the others thank God have not caused major trouble. I have practised sports normally, even high-level volleyball competitions. And presently I exercise often, also my brothers do.
First we consulted a surgeon who loved removing them. We changed to another professional afterwards and he was keen on not removing lumps, unless they were causing trouble. He always advised us to practice sports (especially swimming) and exercise as much as possible. I have a normal life and it has always sounded weird to me calling HME an illness. I only remember I have scars when people ask. Even though I am pleased to have found this site where I can communicate with other people with HME, I have to confess that I becoming worried going through the different stories on the noticeboard. These days I am considering becoming a mom (I really want to have a baby), but sometimes I wonder if I should. What if my baby�s HME experience is not light like mine? I guess it is my choice whether to take the risk or not. Thanks a lot to this support group for giving me the chance of expressing myself. Saludos! My email is avaleria@argentina.com.

 

From Shirley
United Kingdom, 10th May 2006
Hi, my name is Shirley. I have a son, Adam who is 12 years old and who also has HME. His condition was diagnosed around three years ago and we have been told that he has six growths on his legs. This gives me great concern as I know very little about the condition. On 8 May 2006 Adam had an operation to remove one that was the size of a golf ball on the side of his leg just below the knee which was causing him a lot of discomfort and pain. Although his operation went well and he seems to be recovering, I still worry for his future. Does anyone out there know what causes the condition and is it an on going condition? I would be very grateful for any information.  My email is shirleytaylor21@btinternet.com.
( See our pages What is Hereditary Multiple Exostosis (HME)? for  more information.)

From Nikki
London, United Kingdom, 3rd May 2006
My daughter is nearly 16 years old. She has HME and has had several ops and even a year where she was wheelchair bound. Miraculously she is walking again but still suffers periods where she is in a lot of pain (her knee joint) and cannot go to school. Has anyone got any advice for overcoming the pain so that you can have a semi-normal life?? I've tried knee supports, deep heat cream, hot water bottles... She has presently been in constant pain for about three weeks. Any advice would be welcome please. My email is ladybird_68@hotmail.com.

 

From Carol & Graham
Staffordshire, United Kingdom, 26th April 2006
Hi! I've recently found your website and wanted to add my information. Our son Callum has been diagnosed with HME recently (he is 3years old). The condition comes from myself and my dad although we don't seem to be as badly affected as Callum. We are currently in the process of hospital appointments with surgeons and paediatrician. From what they have told us, they prefer to leave the bones as they are until Callum has stopped growing, unless he suffers any restriction on movement before hand. He will have checks every year throughout his childhood though. Just wondering if anyone else has received the same information. My email is carol.paxton27@ntlworld.com.

(This is exactly the course of action recommended by a Consultant Orthopaedic Surgeon speaking at "Conference 2006" at Gateshead on 6 May.)

 

From Dee Armario
Chelmsford, Essex, United Kingdom, 25th April 2006
Hi There, I'm 27 and have had several operations to remove exostoses since I was seven, the most recent last November from my leg. I enjoy attending lots of exercise classes but am finding the most recent class, which is similar to aerobics, is causing some irritation in my leg which had the surgery. Does anybody have the same problems with doing certain sports after surgery?? My email is deearmario1@activemail.co.uk.

 

From Angela Coombes
Wakefield, United Kingdom, 3rd April 2006
I am interested in hearing from anyone who has children who have been diagnosed with osteochondromas. The hospital we attend has never given us any information about this condition except that it is hereditary. I have since found out that it has come from my family side as I have recently discovered that my cousin's daughter suffers from osteochondromas as well. The consultant also treats my cousin's daughter and when I told him this information, he just said "Well, that must be where they are from" and that was that. Any information at all will be very gratefully received. My email is angieneverin13-222@fsmail.net.

 

From Christine Spencer
Newcastle, United Kingdom, 17th March 2006
Our son, aged 9, has recently been told that he could benefit from surgery to remove some exostoses on his fingers which are causing him distress and concern. This is an anxious time for us. Whilst Ryan would love the surgery, we are concerned at the risks involved e.g. growth disturbance, frozen finger, nerve damage, severe scarring and of course further deformity. Are there any members out there in a similar situation awaiting surgery or who have come out the other end who would like to discuss their views/findings good or bad regarding these issues and their recovery? My email is member@spencerc.fsbusiness.co.uk.

 

From Ruta
Gargzdai, Lithuania, 2nd March 2006
Hello. So, I have HME too. My father has it too. I've had 13 operations, and next week maybe there will be one more. You know, I am afraid of that. Now, I feel pain in my leg, and one lump is near the joint. I am 17 years old now. Maybe someone else has had so many operations and can say how it is after 5-10 years? What are the results of having so many operations? It would be interesting to talk with people who have same problem. My email is jrutukas@yahoo.com.

 

From Helen
Manchester, United Kingdom, 23rd January 2006
Does anyone find that their condition is worse in Winter? My daughter has suffered a lot of pain these past few months especially in the bones in her fingers and shoulders. Her consultant's team don't seem to be interested but constant pain is starting to affect her school work, sleep and play. She is exhausted all the time and spends all weekends on the sofa with hot water bottles....! My email is helenandkids@msn.com.

 

From Sarah Kamarudin
NSW, Australia, 1st December 2005
I found out about the Group by searching the internet as neither I nor my husband's family know much about the condition. I am hoping to find others in Australia with MHE who can advise us on specialists etc as none of the doctors we've been to have had any experience treating anyone with MHE. My email is sarah.kamarudin@gmail.com.

(There are some messages from Australia and New Zealand below and some more in our noticeboard archive.)

 

From Bob Champeau
Staffordshire, United Kingdom, 30th November 2005
Hi! I've been having some difficulties receiving Critical Illness Cover from two major insurance companies. My circumstances are that I am one in a long line of family members with HME. Members of my extended family carry the condition and we have a wide range of severity within our family. My dad died 10 years ago from osteosarcoma. It is clear that the insurance companies have made a direct link between HME and osteosarcoma. I was of the understanding that persons with HME had a less than 1 per cent chance of developing bone cancer. I have written to my consultant requesting definitive current teaching but would like to hear from anyone else, worldwide, who may have a similar story to tell or some advice for me. This is of the utmost importance. My son who is now 13 years old has HME and no doubt his children will also have it. Is it to be that the rest of the Champeau generations are to be blighted by an insurance company Chief Medical Officer's misunderstanding of the illness - or has he a more up to date and accurate understanding of the risks than I? It is my intention to carry out some serious research in this matter, for all our sakes. Please feel free to email me. By the way I am described as a mild sufferer. I lead a perfectly normal and healthy life, avoiding contact and impact sports, and have absolutely no intention of getting bone cancer. Thanks and Merry Christmas. My email is bobchampeau@msn.com.

 

From John
Ontario, Canada, 14th October 2005
Hello, I've had three exostoses removed to date. I am experiencing a problem with an exostosis on the outside of my lower left leg just below the knee. It is interfering with nerves causing tingling sensations down my leg and around my toes. I visited my surgeon and he indicated that the exostosis could cause permanent nerve damage and cause drop foot if it is not removed. The surgery alone could damage the nerve and cause drop foot too, according to my doctor. Now I have to decide if I want to have it removed. If anyone has had the same issue with their leg or had similar surgery, please let me know about your experience. Thanks, John My email is johnche30@hotmail.com.

 

From Alan Yates
Manchester, United Kingdom, 17th September 2005
Hi Everybody! Just had an operation to remove a nerve from my left arm to lessen the pain in the left wrist. Found more exostoses pressing on the nerves of my shoulders - got to investigate
and have MRI scans of both shoulders. It never rains but surely pours. Pain bearable but beer is better in moderation, going out with friends, and not SULKING on your own. Hope you all understand my meaning. Keep you all informed. Hope everybody's OK, aln. My email is ayates@btinternet.com.

 

From Linda Slade
Mazarron, Spain, 12th September 2005
I have HME and my history is already on this noticeboard. I wonder if anyone can help me? Has anyone with HME broken a bone and what was the outcome? Three months ago my femur was broken (I was attacked). The surgeons were pleased to have saved my hip with pins and screws, avoiding a replacement hip due to my age (50). The xray shows quite a large exostosis on the femur but not near the break. I was told as a child that I create too much calcium which causes HME. If this is the case, then the bones should be stronger than normal and almost impossible to break. Has anyone else broken a bone? If so, have exostoses grown around the break? Interestingly, the surgeons here in Spain seem familiar with exostoses. I am still in a wheelchair three months after the operation and not able to start walking for at least four more weeks. This has been more painful than any of the 25 earlier operations I have had to remove exostoses from every limb. If anyone has broken a bone please email me. Thanks, Linda. My email is laoasis531camposol@hotmail.com.

 

From Jeff Goldberg
Ilford, Essex, United Kingdom, 21st August 2005
Having read the website, newsletter and various other bits and pieces I am rather worried about what seems to be a medical assumption that the best way to treat an exostosis is to remove it. Naturally I'm sure there are many cases where an operation is the best course of action, but I have to say that I have numerous bumps and only ever had one removed. Of all the rest, only my ankle causes me any real problems. I remember when I was first diagnosed as a child, the specialist planned to remove all the lumps when I was a bit older, but fortunately a transfer to Great Ormond Street Hospital and a new specialist reversed this policy. I've got the feeling that, even today, some kids with this condition are not so lucky and it's likely that many operations and much discomfort are occuring unnecessarily. My email is noonebutjeff@hotmail.com.

(The page about The Effects of HME on this website explains that most exostoses are "just a nuisance" and don't need surgery, while the page about The Treatment of HME gives some of the reasons for surgery.)

 

From Nikki W
London, United Kingdom, 16th August 2005
Not sure if you remember me (or my story) but I have a 15 year old daughter - Daina - who has been immobile for the past year and you were very supportive. You called me at home and told me that your son had experienced something very similar and told me to hang on in there because everything would work out. Daina has come along leaps and bounds - she no longer uses her wheelchair and uses only one crutch to get around (although I don't think she really needs it - she uses it like a comfort blanket, so I'm easing her off it). Not only has her physical health improved but mentally she is totally different. Where she was shy and retiring and almost depressed, she is now out with her friends all the time - I hardly see her!! Her voice even sounds different - happier. It is almost a year to the day when she first lost the ability to walk normally - it happened last September around her 14th birthday. I want to thank you for your support during a very difficult time for me and Daina. You said to me that I would never forget this experience and you're right. Hopefully I will be able to tell someone my story in the future and give them the hope and encouragement you gave me. Thank you so much Helen! My email is ladybird_68@hotmail.com.

 

From Sophie Collecott
Guildford, United Kingdom, 27th June 2005
Just found this website and am amazed how many people have my family's bone condition! My maternal grandfather's parents were cousins and the gene mutated. My cousins have had operations to have their lumps removed and their bones straightened, but I have never had enough pain for operations. My fingers and my knees are the worst for me, with the ligaments becoming caught round the lumps inside the joints. The pain is severe, but I can release them usually after a few minutes. (If you need any tips on how to release them, please feel free to email me.) My kids who are seven and nine also have knee issues, but nothing which requires operating I hope. So I guess I am trying to say that HME hasn't affected my life that much. I just know there are certain sports I don't do (e.g. running - well, that's my excuse and I'm sticking to it!) The kids are very active and into sport, so hopefully with lots of encouragement it won't hinder them too much. My email is scollecott@tiscali.co.uk.

 

From Sylwia
Gdañsk, Poland, 27th June 2005
Hello, I am the mother a boy with HME. He has had one surgery. Now, he has a lot of exostoses. He is also of very low height. Just looking for anyone that can offer me some advice. It would be nice to hear from anyone with children. My email is syljam64@yahoo.co.uk.

 

From Fran Faulkner
Newcastle NSW, Australia, 14th June 2005
My husband and daughter both have Multiple Exostoses. My husband has just been diagnosed with Paget's Disease. I am keen to hear from anyone else who has both. The treatment for Paget's is Fosamax which promotes bone growth so we are concerned about future exostoses growth. My email is faulk321@ozemail.com.au.

 

From Jordi Gilabert i Rofes
Reus, Spain, 13th June 2005
Hi there everyone. Thanks for this great website. I've just discovered it today while searching on internet about my illness. I am a 31 year old guy living in Spain and I believe I have had HME all my life as my first surgery was when I was about three years old. I've had about six or seven operations in a children's hospital in Barcelona, the last one when I was 19. Since then I haven't had real problems with my illness although the pain is always there especially around my two knees and my wrists. Right now the pain is more severe as I am going to gym to try to get in shape ;) and some exercises there are really hard. This has reminded me that I should be more careful as I don't want to have any more operations as they have been always very painful for me. Besides, I am full of scars and I am tired of people keeping asking me the same question. Anyway, just wanted to say hello and if anyone wants to contact me, please do so as I will be very happy to meet new friends that unfortunately suffer from the same condition. Have all a great day and regards from Spain. My email is Jordi.Gilabert@ya.com.

 

From Guido Faralli
Morden, Canada, 10th June 2005
I am a Children's Mental Health Worker. I have started meetings with an eight year old girl who experiences constant hip pain. Her mother and brother also suffer the pain of MHE. However, she appears unable to cope. She is not clinically depressed at this point. Does anyone have suggestions of how I might be of help to this family? All of my fellow clinicians are at a loss. Thank you. My email is gfaralli@bthc.rha-central.mb.ca.

 

From Karen Johnston
Scotland, United Kingdom, 31st May 2005
Hi! My name is Karen and I am from Scotland. I am 33 years old. I have had four operations on my heel and I am going for a scan on my foot next Wednesday. I have been told I need another operation on my toes to get bones taken out. I would like to hear from anybody else who has got the same problem. My email is Claymores04@aol.com.

 

From Kelly Swanepoel
London, United Kingdom, 24th May 2005
I am a 25 year old female who was diagnosed with HME when I was 18 months old. I have all the usual lumps and bumps, some of which have been operated on, as well as hip dysplasia. I have recently arrived in London and am looking for a specialist in the area, as I have been experiencing more problems than usual. Does anyone know how the system works and also which specialist I can approach?. My email is kellyswanepoel@hotmail.com.

 

From Bridgette
United Kingdom, 11th May 2005
Hello everyone! My daughter is having an MRI on the 20th of this month to see if she has HME. She has what seems to be a growth on the top of her femur. The doctor made it sound like this was no big deal, but from reading all of your emails, I am beginning to worry. What happens with this condition? How does it progress? She is 17 months old. I do not have the condition, nor does her father or anyone in our family. Can we carry the gene only and pass it on to our kids? Please share with me any information or websites that I can go to. Thank you very much! My email is bridgetteralph@hotmail.com.

(Bridgette will find some answers to her questions here at http://www.hmesg.co.uk/desc.htm.)

 

From Carol Baker
Ohio, USA, 10th May 2005
I am 53 years old and I have HME. It has been in my maternal grandmother's line for six generations. Some of the family members have had surgeries but I have not. I am participating, by blood test, in a study about HME through Ohio State University. The study is being done in Belgium. They will be notifying me eventually of the results of this research. My daughter who is 28 has had several surgeries. She experiences pain in her arm, because of a shortened forearm. Right now I am experiencing dull aching pain behind my left knee and mild pain when I walk as muscles and tendons move over the lump. I expect to consult with an orthopaedic surgeon soon. Surgeons like to do surgery, I know, but I feel I must make sure it is not the rare growth that is malignant. So far we've had none of those in our family history. I am happy to read that some of your members have had lumps come and go, as this has been our experience, although doctors have denied this to be true. My grandaughter is one year old. So far we have seen no "extra bones". In our family it has been so prevalent that we have been fairly calm about the whole issue. Our roots are England, Scotland, Ireland and Germany. I wonder if it is more prevalent there? Are we all related? My email is cakebake@columbus.rr.com.

 

From Garry Reed
Durham, United Kingdom, 30th April 2005
am writing this message as after seeing my consultant on Thursday 28th April 2005 he informed me that my left tibia and fibula are fused with exostoses and I will have to have them split. Also I have exostoses in both ankles. I am 40 years old. He has also told me that I have osteoporosis of the spine and is referring me to two different specialists. That was sad news to me on top of the multiple exostoses that I have had since being young. Does anyone have any information on the ankle operations and the recovery time please? Also does anyone know if osteoporosis is linked to HME or am I just unlucky? I would be grateful for any information. My email is gazzane@aol.com.

 

From Nikki Wilfred
London, United Kingdom, 19th April 2005
I already have a message on the noticeboard that explains my daughter's situation. Her consultant specialises in Oncology and after attending the AGM in Oxford on 9 April I realised that most sufferers were seeing orthopaedic specialists. Can anyone recommend a specialist in London (or close to) please? Failing this, I will take my daughter up to Scotland to see Daniel Porter but would prefer not to have to travel that distance. My email is ladybird_68@hotmail.com.

 

From Christine Spencer
Durham, United Kingdom, 3rd April 2005
As a mother of a seven year old who has just been diagnosed with HME at the end of March we were pleased to find this website and Support Group. At the moment Ryan has HME in all his fingers and in his hands. We would like to hear from other members who could give us advice and support on what is, to us, an unheard of condition. What can we expect? Is there anyone with HME in the same areas? Is it a strong possibility that we could be looking at it spreading to other limbs? Your help and support would be greatly appreciated in this anxious stage. We are heading down to Oxford next week for the AGM. We are looking forward to learning more about this condition and meeting other families in the same position. My email is christine@spencerc.fsbusiness.co.uk.

 

From Nikki Wilfred
London, United Kingdom, 14th March 2005
My daughter is 14 and has had five removal operations in total on both knees. Usually she uses crutches to ease the pain but once the lump has been removed she can walk without aid. Her most recent attack was in September 2004 and she had a removal in November 2004 and January 2005. However she is still unable to walk without crutches and is even now using a wheelchair at school and to allow us to go out. Has anyone experienced this? I am hoping that she will eventually walk again but just need to know whether I should prepare myself for the worst - that she may never walk again. Does this happen? Any comments/advice would be so appreciated. Thank you. My email is ladybird_68@hotmail.com.

 

From Lisa McGowan
Cheshire, United Kingdom, 8th March 2005
Wow, I don't believe I've suffered with Diaphyseal Aclasia for 34 years and have only just stumbled across this website. The only other person I have met with this condition has been my 3 year (almost 4 year) old daughter. Even as I've been attending orthopaedic clinics I've never met anyone as unique [ :) ]! As I read, I notice that most have the same problems as myself such as the obvious dislocated elbow, bony ribs, fingers, legs etc. These have caused me problems in the past and still do, but not to the point of malignant growths. Bailey suffers mainly with her knees, but I guess my legacy to her is to help her through her early years and make sure she receives all the help she can get (as in avoidance of a dislocated arm etc.) Wishing you all the best for 2005! My email is lisamarler@hotmail.com.

 

From Tracie Warren
Edinburgh, United Kingdom, 2nd February 2005
Both my husband and son have HME and both have had extensive surgery. Ian (Hubby) had about 19 and is 47 and still has lumps growing. Mikey (son) has had about 25 removals done and he's only 12. I was wondering if there was a link between Mikey's condition and his birth weight, 12lb 8oz. Ian was 9lb 2oz which is quite big. Has anybody else had big babies? Just curious to know. My email is scotbun1@supanet.com.

 

From Ken Walters
Cleethorpes, United Kingdom, 14th January 2005
Would just like to say that after all this time we did not know that there was a UK group. Our daughter has had this problem since 1993 when she was born. We had to search the internet then as there was no info on HME at all. She is now 11 years old and has had 18 operations and is due to have a mechanical alignment of her leg this year. She has had operations to her legs, arms, fingers and ankles. She has been in a lot of pain throughout her life but she copes well with it. That's all for now. My email is kenwalters69@hotmail.com.

(The HME Support Group was founded in September 1997, as described here.)

 

From Jacinta
United Kingdom, 6th December 2004
am 13 years old and unfortunately a HME sufferer. So far I've had four operations and am having another two on my arm and one on my finger. Having HME can be a painful experience, not just because of the bones but the looks. Unfortunately I go to a high school where appearances matter. Because of this I get laughed at for my misshapen fingers and my scarred arms and legs. HME is just an everyday problem that I have to learn to accept, along with the looks, the giggles, the sniggers and the nasty remarks. As a teenager this is harder to do. I'm too aware of how my legs look to wear a skirt or a dress like normal 13 year olds do. I've even been excused from wearing the school uniform and PE shorts because of the scars. If anyone else suffers from this please email me.

(If you would like to email Jacinta, please send your message to support@hmesg.co.uk and we will forward it to her.)

 

From Barbara
Columbia, United States, 5th December 2004
Hi everyone! I was diagnosed with HME when I was five years old and have had several surgeries to remove the exostoses. I was told that the exostoses would stop growing when I stopped growing. I am currently 28 years old and have noticed that an exostosis on my shoulder is growing. Has anyone else experienced this? I am a little nervous about it all. My email is withersbarbara@yahoo.com.

(It is not unusual for our members to report that exostoses continue to appear in adult life. See, for example, the message from Brian below. However, we would advise that a professional opinion be sought - we included this important advice in a recent newsletter.)

 

From Cheryl Wysong
Des Moines, United States, 30th November 2004
Thank you to all whom have replied (see next message). I know, now, that I am not alone. I am recovering from surgery and feeling very good about it all. The doctors think the cancer is gone, but only time will tell. My heart goes out to all the HME adults and children. Stay strong! My email is song7778@aol.com.

 

From Cheryl Wysong
Des Moines, Iowa, United States, 30th October 2004
I do not have HME, although I have a condition I would consider close to HME. I have a bone growth called an osteochondroma, which is usually a benign tumour. My doctor said that the chance that this was cancerous was 10% or less. I fit the 10% area and have a low-grade cancer, called chondrosarcoma. I will undergo a pretty major surgery soon, in which, they are going to remove the part of my bone (humerus bone) where the tumour rests. They will replace my bone with a cadaver bone. They are going to go into my hip bone to remove something to help heal my arm to the cadaver bone. I do not follow all the words the doctors say so I do not know what this procedure is called. The best news I have is that the cancer has not spread in my body and has not gone to my lungs. Has anyone else dealt with this type of surgery? Any information would comfort me. I feel all alone. I have not heard of anyone dealing with osteochondroma before. Any help out there??? My email is song7778@aol.com.

(Some information about chondrosarcoma can be found here.)

 

From Tracy Baldwin
Newcastle upon Tyne, United Kingdom, 25th October 2004
In April I put a message on the noticeboard. This is an update. Tony is 13 now and his operation to straighten the bone in his arm, after many months of wearing a fixation bracket, was a success. To date Tony has no more painful lumps. His eight year old brother Reece is due to have a bone removed from his shoulder and underarm in November. Reece has lots of night time pain in his legs. He has lumps in both knees, with a cluster of them in his right knee which often locks causing intense pain. The lump in his right hip is arching his thigh bone and causing a lot of mobility problems and pain. He cannot have the operations to correct his hip just yet and is having hydrotherapy twice a week until then. He also has lumps in both ankles, fingers, ribs, wrist and toes. My email is tracybaldwin4@hotmail.com.

 

From Roberta Barron
Reading, Berkshire, United Kingdom, 21st October 2004
When my daughter was three, she became unable to walk as her knee locked due to a trapped tendon. She has very large exostosis on the inside of her knee which caused the problem. After a week it sorted itself out and she was back to normal. She is eight now and it happened again four days ago. Her leg is locked in a bent position and it's causing her great discomfort. I have tried massage, hot baths and a tubigrip but nothing. If after a week it's no better she will have to go to hospital. Just looking for anyone that can offer me some advice on how to get it back to normal or has had a similar problem. Cheers Roberta. My email is bobbie4147@aol.com.

 

From Jennifer
Florida, United States, 15th October 2004
I think it is wonderful that there is a website like this. My 4 month old son, Drew, has just been diagnosed with MHE. I am very scared because he has shown signs at such an early age. He has 4 ribs that are affected--all anteriorly. This was passed to him from my husband. We knew of the 50/50 chance, but hoped and prayed to be on the plus side of the coin. My husband has had several surgeries in his life--he is now 39 years old. Has anyone had a child that was diagnosed at such an early age? Does it commonly affect the ribs? The research I have done rarely mentioned the ribs. I am worried/scared/in denial--does this mean he will have a severe case of MHE. No matter what he is beautiful to me and a miracle that he was conceived. I am babbling--any input from anyone on the age and location of Drew's beginning of MHE would be greatly appreciated. Best wishes to all. My email is jjas69@aol.com.

(It is not unusual to develop exostoses on the ribs, as noted here.)

 

From Teresa Gilmore
Cheltenham, United Kingdom, 23rd September 2004
I was wondering if any other HME sufferers have experienced something similar to this? I've recently been diagnosed with tendonitis in my right arm after carrying out a repetitive task at work for only nine months. Other people (non-HME sufferers) have been doing a similar job for at least two years and without any sign of Repetitive Strain Injury (RSI). Has anyone else found that they are getting RSI symptoms more quickly than their work colleagues? How did their work place treat them? Mine is not being totally sympathetic. Thanks. My email is dragonaddyct@blueyonder.co.uk.

 

From Laura
Solihull, United Kingdom, 23rd September 2004
I am 17 years old and am currently learning to drive. I have a lump on my left ankle which is causing problems with my clutch control. Until now I have been lifting my whole leg when using the clutch but my instructor has told me I need to keep my heel on the floor while the ball of my foot and toes touch the clutch and then lift the clutch keeping my heel on the floor. I am finding this uncomfortable as I can feel the muscle tense around the lump. I don't feel pain just an uncomfortable "pull". Has anyone had a similar problem or got any advice as to ways to overcome this? I would appreciate any suggestions. My email is laura2114uk@yahoo.co.uk.

 

From Debbie Errington
Preston, United Kingdom, 16th September 2004
Advice please! My daughter Kayleigh has HME and has had an exostosis removed from her C1 spinal vertebra. Before the op she developed uneven pupils which seemed to return to normal a while after the lump was removed. Now a year later the uneven pupil has returned (for the last two weeks) and I am wondering if anyone has any experience of this. Her neurologist is not sure that it is related to the spinal exostosis and an MRI scan done 4 months ago shows no sign of the lump returning. Anyone any ideas? My email is mickerrington@blueyonder.co.uk.

 

From Paul Ross
Vanderbijlpark, South Africa, 14th September 2004
Hello Everyone with HME. I am 38 years old and have had about 20 operations. I have lumps on virtually every long bone in my body; I've been told that I am a "Text Book Case"! I have had operations on both legs and my right arm to remove lumps, including one the inside of my right leg which has been removed three times. In 1988 I became paralysed from the neck down because I had five lumps on the inside of my neck and was in a wheel chair for five months after surgery. In 1998 one of these returned and had to be removed again, but fortunately I didn't become paralysed this time. There isn't anybody in my family with this condition, nor have I met anybody that has it. I would like anyone to contact me who has been affected by HME in the spine and neck. I also have a dislocated right elbow and would like to know if anyone has had corrective surgery for that. I was born in England and emigrated to South Africa when I was seven. My email is paul@macsplus.co.za.

 

From Rosnita Boland
Liverpool, United Kingdom, 10th September 2004
Can anybody contact me who is in the same position as myself? I am an HME sufferer. I have been told by Prof. Simpson, Edinburgh. that I am a difficult case. I have had three operations in the past 18 months. The Prof. cannot tell me why I am in so much pain. I am prescribed morphine, slow release which I have taken for two years. I am down to a very low dose and am finding it hard to come off this drug. I feel frightened that I am on such a high powered pain killer as I do not know what the long term effects are. It doesn't get rid of the body pain but helps me to cope by giving me some energy to work. I am 50 years old and work full time as a school nurse. I swim four times a week and find relief in the use of a sauna and jacuzzi. My condition is affecting my mobility as I need to use a walking stick. I also get a lot of nerve pain. I would appreciate anybody in my position or similar offering advice on how to get off the morphine. Please contact me via email. Thanks. My email is lisamorgan03@yahoo.co.uk.

 

From Full Moon
Greece, 3rd September 2004
I am a mother who suffers from multiple exostoses. I was the only child in my family of six with it. So I gave birth to a daughter who is now 28 years old. At the age of two, we discovered that she too has HME and that it is hereditary. She and I have had no serious problems. Now she is married and thinking of starting a family. Should she do so or will there be serious problems for her children? My email is fullmoon@acn.gr.

 

From Lisa Terrell
Dublin, Texas, United States, 31st August 2004
Well it has taken me a while but I finally found some people with the same thing! The doctor told me mine was called multiple congenital ostechondromas but when I looked it up it is called HME. Anyway, I was wondering if anyone finds them more painful in the winter time than in the summer. I have two brothers and a sister, plus my dad who has this condition, but there is no one else in my family with it. Also, is there anyone else who gets sick to their stomach when the lumps start hurting because we do? Thanks and please let us know soon. My email is TERRELi3@aol.com.

(Click here for some of the other names for HME.)

 

From Jenn
Toronto, Canada, 16th August 2004
Hi, I was diagnosed with HME when I was 18 months. I am now 33. From all the research that I have done, HME has affected me in the textbook fashion. I've had 13 surgeries to remove lumps that have interfered with my growth, my mobility, or have caused me pain (back, shoulder, ribs, arms, legs, etc.) I inherited this from my mother, however it cannot be tracked further back than her. However, her lumps never interfered with her. Her lumps on average are the size of peas, whereas mine are on average the size of golf balls (though some larger have been removed). My concern right now is that I am newly married, and am considering having children. I am fully aware that each child would have a 50/50 chance of getting the condition. However I am worried about how severely my child would be affected. Is there any information available, or is there anyone who has had a similar history and has had children? Thanks in advance. My email is mrsk@jkoppes.com.

 

From Candace Lopez
California, USA, 6th August 2004
Due to this condition, I had my first operation on my left leg when I was 6 months old. At the age of four, I had surgery on my 2nd rib (right side) and on the back of my neck and then the exostoses became dormant. Once I reached my thirties, I developed multiple exostoses on my right and left legs and my left arm (I'm left handed) and had several surgeries to remove them. I'm 36 years old now and I have one exostosis on my right leg and left arm. At this time I'm managing pain with medication, waiting for the exostoses to grow bigger before the doctors remove them. All the research I've seen has discussed children with exostoses and maybe one or two adults with one instance of an exostosis. Is there anyone out there with a similar case as mine? If so I'd like to discuss in more detail. Thank you. My email is clopez1016@yahoo.com.

From Brian
Preston, United Kingdom, 6th August 2004
I was diagnosed with HME at the age of five, though I suspect that the lumps were noticeable before this age. My HME can only be definitely be traced back as far as my father who, at the age of 60, is still having problems. However my grandfather did have a a noticable hump on his shoulder that I only became aware of later. I had my first operation at five. At the age of six or seven, my parents noticed that I was walking oddly and after numerous x-rays it was discovered that I had a lump on the left upper femur, causing my pelvis to tilt and requiring me to wear a lift in my left shoe. I have since had several more operations on my legs, both above and below the knees, as well as having a lump removed from the back of my right hand. Has anyone else been told "When you stop growing, the lumps will stop as well"? My father's parents were told this when he was diagnosed and my parents were told the same but my father had to undergo surgery at the age of 36 for the removal of a lump that had already been operated on, while my lumps are still growing and causing increasing pain. If anyone else suffers from lumps on the upper femur, please could you let me know how difficult mobility is for you. My email is adu27uk@yahoo.co.uk.

 

From Stephen
Leicester, United Kingdom, 13th June 2004
My HME has been playing up for the last few weeks. Is it normal for us to have lot of pain for two weeks in the same place? I am asking because the last time my leg hurt me, the pain just went away in a few days. My email is phantomsteve35@hotmail.com.

 

From Srinivas Yanamandra
Patancheru, India, 11th June 2004
Please let me know if there any treatment of HME in homeopathy, Chinese or Unani medicines as these have few side effects and are cheaply accessible. Thanking you, Srinivas Yanamandra. My email is yss_bk@hotmail.com.

 

From Linda Ramsden
Barnsley, United Kingdom, 21st May 2004
I am 33 and have had HME since I was a baby. My father had it too but he died quite young (unrelated) and it was something he never really talked to me about. My younger brother is a sports teacher and soccer co ach and has no signs of HME. I have had eight operations and still have eight lumps on various parts of body - not all on joints. I do have one on my head and one on my ribcage. As a child and teenager I was very sporty - played netball, hockey (you will understand how painful this was when bashed on the leg) and I was even doing circuit training up to the age of 26. I was also in a high powered physically and mentally challenging job up until two years ago. I had pneumonia and since then my health has plummeted. Two of the lumps on my leg have grown back. One cannot be removed due to its proximity to a major blood vessel and the other is now the size of a grapefruit. (So much for them stopping growing when you are a teenager!) I am currently trying acupuncture and am thinking about reflexology next. I use lavender oil (as recommended by another group member) and also a heated wheat bag. Mattress toppers are great for pressure relief on your bones too! I can no longer do any kind of contact sport and the most physical I get is swimming which I find great for relaxation. I do manage to walk my dog but find myself absolutely exhausted after walking less than a mile. I wonder if many more of you feel tired all the time? I have had to take a job within an office where I can sit down for the majority of the time and am lucky to have good support now (after much battling for equipment etc.) from my employers. I am currently in the middle of applying for a disability living allowance and also a blue badge for my car but am having problems with any of the GPs even knowing what HME is. Hope some of this information may be of interest to others on the notice board. My email is lindaramsden21@hotmail.com.

 

From Ian Warren
Edinburgh, Scotland, UK, 5th May 2004
Thanks for a great day. Nice to put faces to names. My family enjoyed the topics covered - we all got a lot out of this. Once again keep up the guid work (mad as ever) Ian. My email is scotbun1@supanet.com.

(Ian is referring to Seminar 2004 which took place in Edinburgh on Saturday 1 May. We hope soon to have a report of this meeting available.)

From Kelly
Brighton, United Kingdom, 21st April 2004
little boy Reuben (two years old) has HME inherited from his father. I thought I would share the happy news with other members of the group that Reuben is to appear in a baby picture book due to go on sale next month. Its called "Amazing Baby: I love you" published by Templar and will be available in most bookshops and in mothercare. He's such a beautiful boy and I'm very proud of him :o) My email is chuckleplum@yahoo.com.

(On 26th May 2004, Kelly wrote: "Reuben's book is now out and in most good bookshops! It's a lovely book for young babies/toddlers and if you come across a copy, you'll spot my Reuben in the bath (v. proud mum!).")

 

From Tracy Baldwin
Newcastle upon Tyne, United Kingdom, 17th April 2004
My two sons have HME. My eldest is 12 years old and has just had his fourth set of surgery to remove a bone and to lengthen his arm which will take about four months. My youngest who is eight years old has also just had surgery to remove a second lump from underneath his fingernail. He has many operations to come on his knee, fingers, ankle, hip and shoulders. He cannot have his hip operation until next year and is having physio and hydrotherapy weekly to relieve the pain. This is from their Dad's side of the family. My two boys have it much worse than anyone else in the family. My email is g.crulley@talk21.com.

 

From Borhan Ahmed
Elmhurst, Queens, New York, United States, 15th April 2004
My first son will be five years old on May 23rd. I recently discovered lumps on his left leg, above the ankle joint and below the knee where he has a bigger lump. There are also lumps above the wrist joints of both hands. These lumps are not on the joints themselves but on the bones. We have not noticed any more on his body. I spoke with the Paediatrician and was recommended for x-rays. Last night I got a call from his doctor with this new name "HME". I have never heard of it and no-one in my family has it. I noticed that my wife has two little lumps - one below the right wrist and another one on the right leg above the ankle joint. The first time I noticed these was after hearing from the doctor that HME is hereditary. If any one has experience of this, please share it with us to help our son's future. What other side effects may this cause? What is the treatment for it? If there is any one in New York, close by us, please help us to find a good Orthopaedic specialist for children that we may take our son to. Your help would be greatly appreciated. Thank you. Borhan Ahmed. My email is bssrahmed@yahoo.com.

 

From Mandy Coombes
Cheshire, United Kingdom, 8th April 2004
My daughter was two when we found out she had HME. We drop the "H" as no one else in our family has the condition. She had one lump removed from her hand last year and, last week, had two removed from one foot, one from the other foot and one from her wrist removed. She's only three years old. There are other lumps but time will tell if they need to be removed. I have spoken to a few adults with the condition but it would be nice to hear from anyone with young children. My email is robert.coombes7@ntlworld.com.

 

From Helen Jones
Flintshire, United Kingdom, 30th March 2004
I have had HME all my life and have a large number of lumps all over my body. I have only had to have two of these removed however, due to them not causing any problems. I would like to hear from anyone who has got any on their rib cage as I have been having problems with chest pain and am now informed that this is probably due to a "lump" being on the same. Again I would also like to hear from anyone who has a number of lumps all over the body as I was lead to believe that they are mainly on the legs, arms and spine. My email is handbj@supanet.com.

 

From Janet
Sheffield, United Kingdom, 24th March 2004
After several years of odd lumps growing and no one knowing what they were, I have just been told today that it appears I may have HME, although further investigation is needed. I am quite worried now after reading some of the messages left on here. I have suffered for years and have two painful lumps which cause me no end of pain and discomfort. I have had operations but they have grown back each time. I want to have children in the future but nobody can tell me if they will have HME and if they do, will it be worse than what mine is? I also don't know if I have them elsewhere on my body. Is there any way of finding out? Do the doctors automatically check to see if you have them elsewhere? I have problems with my back and am now wondering if this is the cause. If anybody can shed any light on my questions you could help me put my mind at rest! My email is booti4u1971@aol.com.

(There is 50% chance of passing HME on to your children. Click here for more information.)

 

From Karen
United Kingdom, 14th March 2004
My name is Karen and I am from Scotland. I have got exostoses on my heels which means I can't wear shoes without my feet being padded. I also have osteoarthritis on my toes. I would love to hear from anybody else who has the same problem. My email is claymores04@aol.com.

 

From Jayne Murphy
Glenrothes, United Kingdom, 28th February 2004
My daughter was three weeks old when we found the first lump but the doctor dismissed it and said it would eventually disappear, which it did. When she was just over two years old I found a large lump just above her ankle. We saw a consultant at our local hospital who confirmed it was HME. Since then she has had many lumps appear, some large and some small. We have been told to keep an eye on her and to visit the consultant every six months. So far she doesn't seem to be aware of any pain but this will change as she gets older. She has an older brother and sister who have no problems but I do have a second cousin who resides in the USA. She has something similar called Neurofibromatosis which are lumps under the skin. So far apart from my congenital hip disease which I was born with, we are the only ones in the family with bone or skin problems. It is a bit of a mystery why my youngest daughter has this problem. If anyone has any further information on HME, I would be very grateful. My email is jayne@oaksoft-consultancy.com.

(Although exostoses can be painful, they are usually just a nuisance. Click here for more information. HME is a condition affecting cartilage and bone, whereas Neurofibromatosis is a condition affecting the peripheral nervous system. As far as we know, there is no relationship between these two conditions. HME can occur without being inherited from either parent, as discussed here. )

 

From Donna
Fort Myers, FL, United States, 28th February 2004
I need the names of doctors who are experts in the area of multiple hereditary exostosis (HME), especially surgeons for possible cancer. My email is dhhappysea@comcast .net.

 

From Emma Dixon
Newton Abbot, Devon, United Kingdom, 25th February 2004
My son has been having problems with bony growths since he was six months old. After two operations and another possible soon I have today been told my son's condition is called Diaphyseal Aclasis. I have been seaching the web all day finding information on this condition. I would like to hear from families with children with this condition so as to gain some idea of what to expect. What help is availible for children with this condition? My son is now 11 years old. My email is emma.dixon5@btopenworld.com.

(Diaplyseal Aclasis is another name for HME. See this page for a list.)

 

From Wilma van Wijnen
Amsterdam, Netherlands, 24th February 2004
Hi there. First of all my compliments to your wonderful website, there is a lot of clear presented information on it which is very useful. I am Wilma and my daughter Sam, aged 5, is recently diagnosed with HME. The specialist however says, it might be that it is in a mild form. But for me as a parent it is difficult to cope with. I have seen the lumps coming up in the past half year. And I know, via the x-rays that there are hidden ones in her knees, feet and hands. Because no one in our family has HME, I do not know much about the progression of the growth of the lumps and of course the (near) future. It would be easy to follow the doctor's advice and not worry to much, but the big uncertainty about the development of the disease is difficult to accept. I'm trying to look at Sam as she is right now. She doesn't suffer and her mobility appears to be normal. But how quick can it change? Is there anybody who can tell me more about the development of the lumps, or their experience with a 'mildly' diagnosed loved one? I just want to have some personal information next to all the things I've read so far on several sites (including the HME-group in Holland). Thanks a lot. My email is wwijnen@xs4all.nl.

 

From Lynne Colvill
Chatham, United Kingdom, 23rd February 2004
Has anyone had exostoses removed from their pelvis? I have recently been told that I have several lumps which are causing me major problems. I am frightened about the whole thing and was wondering if anyone has had the same experience. My email is chatham_girl23@hotmail.com.

 

From Claire Ferguson
United Kingdom, 22nd February 2004
Hello, our son Daniel, who is 13 years old, has been told he has spinal growths caused by HME (Osteochondromata) on two areas of his cervical spine and is due to have these removed by a neurosurgeon in March. We would appreciate information on the incidence of spinal exostoses. If anyone has had any experience of this, could they contact us please? We would certainly appreciate hearing from someone in the same situation. Thank you. Claire and John (Daniel's parents). Our email is claireandjohn@toweravenue.freeserve.co.uk.

 

From Nathalie Battour
North Auckland, New Zealand, 4th February 2004
Hello, my name is Nathalie and I am 38 years old. I was born in Mauritius and grew up in Australia, thus moved to N/Z 14 years ago. I have had numerous MRI scans and operations for the removal of exostoses, particularly in my legs, with the last being on my ankle last year, and with so many complications. I too find that they don't seem to have stopped growing as I had been told. I am slowly losing mobility in my arms and legs and restricted now by pain with walking etc. I have two boys aged 9 and 15 who I have passed MHE to. The oldest has had numerous operations for the removal of exostoses in his arms and legs and for elongation of the forearm. My youngest has had one exostosis and will begin his journey of operations in April. I would be interested in corresponding with anyone who would like to share advice on how to cope with pain and other symptoms as one can feel quite isolated at times with keeping up to date with treatments etc. It is only in the last couple of years that I have really learnt about MHE through the internet as it quite rare here. My father who also had MHE was born in Mauritius where they knew nothing about it, hence my family could not really enlighten me on the subject. Kind Regards, Nat. My email is owenga@ihug.co.nz.

 

From Vera
St. Louis, United States, 1st February 2004
Me and my husband are wanting to have children in the near future. We can't seem to find any information on whether or not osteochondromatosis (HME) is hereditary. No one in his family has had it, so we don't know if he inherited it from them or not. Any information on this would be greatly appreciated. Thank you. My email is ajsladybug20@yahoo.com.

(See this page for information about how HME is inherited.)

 

From Rick Sevilla
San Diego , United States, 27th January 2004
I am 32 year old male that has just been diagnosed with HME and would like to get more information on what your experiences have been and what should I expect. My email is ob1sevilla@yahoo.com.

 

From Garry E Reed
Stanley, County Durham, United Kingdom, 18th January 2004
Hi, �it's me again, Garry. I'm 38 and have had numerous operations to remove exostoses. I was told that when the skeleton stops growing, the exostoses stop as well but�I have found this is not the case in myself. I have just recently had more grow on my spine and one growing back on my left femur which�I had surgery to remove in the early 1980s.��More worryingly,�I have a new one in my left nostril. I have been passed to an ENT specialist and have not been diagnosed yet but�I am pretty sure it's an exostosis. I was always told that they didn't grow on the head.� Could anyone please let me know if you know someone else who has an exostosis the head please. My email is gazzane@aol.com.

 

From John Tansley
Sheffield, United Kingdom, 4th January 2004
I became aware of this group through my brother whose son is going through a difficult time right now with this condition. I have suffered with HME since I was born, with big growths on both my knees and other areas. I can tell you that school wasn't easy. I had the first major operation when I was 17 and then another one about a year after that. For about 18 months I was an invalid, but after I recovered, I started getting fitter and 12 months later I was in the British Army. I have since had four more operations on my feet, two on each. I hope that I don't have to have any more but you never know, do you? To the people who are going through a tough time just now, I'd like to say that I now cycle everywhere and have run marathons. The scars have healed. Good luck to all of us who have HME and continue to live with it. You can email me any time. My email is john_tansley2004@yahoo.co.uk.

 

From Ineke Roelandschap
Zoetermeer, Netherlands, 4th January 2004
I have a question. In my right foot, the fourth toe, my metatarsal bone is missing. This causes some problems sometimes, and now my doctor wants to operate on it and enlarge the bone in my foot. This is quite a risk. I would like to know if anyone else, ever had such an operation, and tell me something about it. Thank you. My email is runlikehell_kittie@hotmailcom.

 

From Claire Cooper
London, United Kingdom, 24th December 2003
Hi, I am 28 and have had HME all my life. I have always thought I was the only one affected as I come from a big family and am the only person to have HME. Finding the website has been great, just knowing there are others feeling the same way. I have recently had my eleventh operation to remove a "lump", this time on my ankle. It would be great to hear from other HME sufferers to exchange experiences or just for a chat! My email is clairemich2003@yahoo.co.uk.

 

From Theresa Kierzek
Tea, United States, 12th December 2003
Hello! My five-year old son was diagnosed with MHE two days ago. Here in South Dakota they are unable to give me any information. I searched the Internet for answers. I feel completely lost. I have not even told him about this. Can anyone help me with any ideas about where to begin and where to find a doctor etc. and email me? Thank you. My email is tkierzek32@yahoo.com.

 

From Richard Sieben
Calgary, Canada, 9th December 2003
Hi! I'm Richard. I am 42 years old, married and have a three year old daughter. I have multiple exostoses and I can tell you the problems and of countless visits to the hospital because of my bone disorder. I have had numerous operations - I have lost count. My last operation was in 1987 and hopefully I won't have any more surgeries. Problems I have encountered are joint pain, back pain and limited physical activities. In the past, I have had problems with holding jobs because some of them were physically too demanding. My body is full of fading scars. I now have a family. So far, my daughter does not have any signs of the bone disorder, and thank the Lord! I have accepted my condition and also have a good career in real estate appraisal. My email is service@zindler.ca.

(On 10th February 2005, Richard reported: "Just a quick update on my daughter's condition. She is approaching her fifth birthday and still shows no signs of the meddlesome bone disorder." )

 

From Denise Lavigne
Wells, United States, 4th December 2003
My daughter, Gracie is 13 years old and was diagnosed when she was two years old. She has nearly 100 exostoses. I need advice: She has two large lesions, one above her knee and one below her knee. She hasn't been able to bend her leg or walk on it without extreme pain since mid-October. The doctors keep saying they don't see anything on the x-rays, ct scan or mri that would cause this pain. We feel that they don't think it's as painful as Gracie says. Does anyone know what other diagnostic tests can be done to show more detailed images of the soft tissues, such as tendons or nerves that could help the doctors understand? I'm glad I found this group. We need it. Thanks! My email is denise.lavigne@anthem.com.

 

From Roberto
Recife, Brazil, 27th November 2003
Good day to everyone in the site! I would like to notice about my fourth child now an year old boy. No yang to realizing whether he is HME afflicted or not. Also, send you my permanent e-mail address for contact: jfg1@fisepe.pe.gov.br. Thank you and best wishes to everybody from Roberto Wanderley Nogueira.

(Roberto wrote to us in July 2000. You can find that message and a link to his website in our archive.)

 

From Linda Ann Slade
Mazarron, Spain, 17th November 2003
I am so pleased to have found this web site. I am 50 years old and have HME. I have had 25 exostoses removed, 11 from my legs and hips, four from my fingers and wrists, one from my ribs growing inwards, in danger of puncturing my lung, and several taken off both shoulders. All my life I have never known anyone else with HME and neither have the surgeons who have operated on me over the years. I was told the bones would stop growing at 21 years but have had at least 15 operations since then. I live in Spain and have a daughter age 21. Thank goodness, she does not have HME. I checked every limb on her from the day she was born. My father had three exostoses but never had surgery and my great grandmother also had it. I am lucky that my many scars are not too visible (sun tan helps). I have always been restricted in sports and physical activities but I do as much as I can. I can't be on my legs too long and can't walk long distances. However my husband and I go skiing and with specially adapted boots, I may not be a downhill champion but am so proud of my achievement, considering my restrictions. I was wrapped up in cotton wool through my childhood, but in later life you have to try and fulfil all your ambitions. My email is laoasis531camposol@hotmail.com.

 

From Bez
North Vancouver, Canada, 29th October 2003
Hey Everyone: I'm 20 years old and have suffered from HME for as long as I can remember. I have tried ignoring it... but it's starting to catch up with me. It was passed down by my father. I just want to talk to other people who are going through the same thing as me. I feel really alone about it and it would be nice to know that I'm not the only one. Thank you, Bez. My email is bezy41@hotmail.com.

 

From Ingrid
Orebro, Sweden, 9th October 2003
Hi, I have a five year old daughter with HME. I would really like to find some families (in Sweden) to share hospital/doctors experience with. My daughter has had some bumps removed from her finger and left arm. I don't really know how many bumps she has, but a good guess is 40-50. The most of these are only seen on the x-ray so far. I have many thoughts about how you make sure none of these go malignant, but as I read on this outstanding website, this doesn't seem to be a big problem for most of you? Please send me a mail if you would like to talk a little about this. My email is ingrid_elgenklow@hotmail.com.

There are many more messages in our archive.

 

Can you think of anyone else we should link with?

We know of support groups in the USA and Europe. Can you think of anyone else we can add to our links page? They need not be on the Internet - a postal address or telephone number would be just as useful. Send us an email if you do!