Noticeboard Archive
From Kate Crawford
Cheshire, United Kingdom, 4th October 2004
My 14 year old son has had 11 operations to date. He is also in the middle
of an ankle correction using a fixator. Last week he suffered a spontaneous
pneumothorax in his left lung. Has anyone else had a similar problem?
If so, please email me. My email is walkinlooneybin@yahoo.com.
From Lucy
Suffolk, United Kingdom, 21st September 2003
Hi, my husband is 27 and has multiple exostoses. We have never been told
that it is hereditary. Is this true in all cases? We are thinking about
starting a family and wanted to find out more and what the risks are
(if any) as his consultant dismissed it when we asked him. Would love
to hear from others as no one else we have ever spoken to seems to know
anything about this. My email is lucyjcroft@hotmail.com.
We have had some problems emailing Lucy. If you would like to contact her and your email is returned, please forward it to support@hmesg.co.uk and we will ensure she gets it.
From Sarah
Dorset, United Kingdom, 17th September 2003
I am nearly 24 years old and have suffered from HME since I was three.
My father also has HME from his father as does my uncle (who has the
condition quite severely) and brothers. However none of my aunts developed
it, nor did my elder sister. Compared to many of the stories that have
been posted on this fantastic web page, I have had it relatively easy.
I have had one growth removed when I was 12 from my right back thigh.
It grew back!. I decided to search the web as about 10 months ago I experienced
a severely painful trapped nerve in my right shoulder - my arm was effectively
paralysed for nearly a day and all I could do was take painkillers to
help ease the burning sensation. It happened a few times over four months
and after a MRI scan and numerous X-Rays etc (bet you�re all used to
them!!!!) it was found that it was probably one of my "extra bones" catching
against a nerve. I have lost the feeling in the lower part of my arm
(but no loss of movement) and the muscle in the whole of the arm had
deteriorated substantially after just one episode. The nerve has not
trapped for about three months now (thank God), but the arm is still
weak and I get twinges. The surgeons still want to operate, but I have
to say that I am reluctant. I have a wonderful consultant and surgeon
and trust them fully, but I am not sure that it will help if it grows
back or there are complications. Has anybody out there experienced a
trapped nerve due to HME or had operations on their shoulders? I really
hope to hear from anybody who can give me more info. My email is sari1@fsmail.net.
From Nancy Baatz
Bohemia, United States, 2nd September 2003
My daughter has been dealing with HME since about 6 months of age. She
has not had any surgeries as yet but recently had a chondroma become
malignant. She now has to go through a multitude of tests and surgery.
You can imagine all our fears and concerns. We would love to hear from
anyone who has experienced this. My email is baatz826@aol.com.
From Carolanne
Scotland (UK), 30th August 2003
Can anyone out there help with information about exostoses on the spine?
Our 20 year old son has just developed exostoses on the base of his spine.
The lumps started to grow six months ago. He also has exostoses on his
knees, hands and shoulders. So bang goes the theory about them not being
a problem after puberty. He is in a lot of pain and finds it difficult
to walk. He lives in Aberdeen and we on an Island miles away. The Consultant
he has seen knew nothing about HME and said he would see him in six months
to a year. Does anyone know a Consultant in Aberdeen willing to look
at our son before permanent damage is done? Our email address is iainkilbrannan@yahoo.com.
From Michelle
Phoenix, Arizona, USA, 23th August 2003
I did a Google web search. I am a marathon runner and I am susceptible
to injury because of the slight deformities I developed as a child. I
believe some of the deformity could have been corrected in childhood.
The problem was that my condition was mild so doctors did not want to
do anything. All they did were unneccesary removals of exostosis that
were easily reached. I want my daughter's treatment to be more complete
and effective. That is why I am joining your group. My email is mtuton@cox.net.
From Nathalie
New Zealand, 13th August 2003
My name is Nathalie and I am 38 years old. I was diagnosed with MHE when
I was four in Australia. I was born in Mauritius and my father had MHE,
although was not diagnosed until he was 40, when he left Mauritius for
Australia. I have two wonderful boys, 9 and 15 years, who both have MHE.
I had not known much about MHE until I got onto this website. I had surgery
earlier in February on my ankle which is still recovering. I find the
older I am getting, the more pain I seem to experience. Both of my boys
are under treatment at the Starship Hosptial in Auckland. My older son
Steph who has had nine operations, including one in February on his wrist
and knee, has a lot of pain associated with the surgery. My youngest
Jack does not have much pain but has Madelung's deformity - as does my
oldest - where one arm is much shorter than the other. He will have corrective
surgery for that at Christmas. Steph had corrective surgery on his arm
when he was eight and it has healed and lengthened wonderfully. Thanks
for your on-line support. My email is owenga@ihug.co.nz.
From Marie
United States, 1st August 2003
I am a mother of a five year old with HME. I also have the condition.
He has just undergone major hip surgery to remove tumors and angle the
femur into the hip socket. Although the surgery was considered successful,
he has ended up with a one inch (2.5 cm) difference in leg length. Without
going into too much detail, the doctor thinks in the next several years
the shorter leg will grow faster and this difference will be made up.
I am not so sure. I am going to doctors for second opinions but would
love to hear from anyone else with this type of experience. My email
is storgion@swbell.net.
From Mandy
United States, 31st July 2003
I am 26 with MHE, very happy, healthy and unaffected in my daily life
by the condition. I did have two surgeries when I was in 5th grade for
this condition, but do not deal with or think about it regularly. However,
now my husband and I are thinking about having a baby. As I know there
are affected mothers out there with affected children, can you tell me
about your experience as a mom? My mother (who does not have the condition,
nor does anyone else in my family) will only tell me what a blessing
I am, beautiful and how could I even doubt bringing a child like me into
the world... all the things that mothers say :-) Anyway, any advice from
young moms with MHE out there? My email is hawesmd@yahoo.com.
From Daniel
United Kingdom, 27th July 2003
My name is Daniel and I have had HME all my life. My worst case is around
my chest area and it sometimes gives me quite a lot of pain. Has anyone
else had this problem? My email is harry.cooke@virgin.net
From Melody
Australia, 8th July 2003
Please contact Melody at udderend@bigpond.com.au if
you have had any successful treatment of recurring osteochondromas after
skeletal growth has stopped and after numerous removals of the same osteochondroma.
From Betty Thompson
Maiden, United States, 27th June 2003
Hi All, was very happy to learn about this site. Now I don't feel all
alone. I'm 41 yrs old and have had HME since I was three years old. I've
had lots of operations since then and when I was 11 I was in hospital
for over a year. For the last three years I've been having problems walking
or lifting due to pain and feeling that my left leg was going to give
way. I've now found a pain specialist. She is great! Before my visit
she had read up on MHE and told me lots of stuff that I've never been
told before. I thank God for this lady! All I can say to all of you is,
keep your head high and don't be ashamed of how your body looks. If no
one else likes the way you look, they don't have to look at you! My email
is redwolfbett@aol.com.
From Romain Chapdelaine
Lyon, France, 25th June 2003
Bonjour j'ai 36 ans moi, ma soeur jumelle et ma fille avons une HME.
Je cherche a rentrer en contact avec des personnes en france pour ne
plus �tre seul face � cette maladie. Hi, I'm 36 and I have HME, as
has my twin sister. I've got a three year old daughter who has several
exostoses. I talked to a surgeon who thought there was no need to operate
on such a small child. But in fact I suspect a shortening of both arms
and torsion too. I've been operated on seven times from age five. I have
many questions and the problem is that I do not trust surgeons' advice,
as they have not been able for me to prevent shortening, or to advise
me about tumorous risks. I would like to meet people in France concerning
HME, whatever the town. Please if you have children with HME, in France,
contact me. I feel a little lonely and I don't know many things about
my own disease - my family did not talk about it. My email is romanovitch2002@yahoo.fr.
We have information on this site about arm lengthening and the risks of developing tumours. Our links page page includes a link to Les Exostoses, the French HME Support Group.
From Kylie Neal
Sydney, Australia, 24th June 2003
My daughter Tegan is 12 years old and has bumps on all major bones. The
biggest worry is one is twisting an artery on her femur. We live in Sydney
and despite looking cannot find anyone for her (or me) to communicate
with in Australia. Her surgeon isn't very efficient on the personal side
of things either, so any advice on helping a girl entering her teenage
years to cope with very visible hand, feet and knee deformities would
be greatly appreciated. My email is kylieannneal@hotmail.com.
From Karen Johnston
Coatbridge, United Kingdom, 18th June 2003
Hi! I've been attending hospital for the last 16 years and have had exostoses
removed from my ankles four times. At my last visit, I was told that
they can't remove any more or they will damage my foot. They are getting
me shoes made of special material that I can pull over my bump. I have
had exostoses on my ankle since I was eleven years old and am now thirty
one. If there is anyone who has got a similar problem with their ankles
I would love to here from you. My email is sweetheart8@btopenworld.com.
From Frances
Fife, Scotland (UK), 27th May 2003
Hello! My HME was noticed when I was seven years old - I kept tripping
over and skinning my knees and someone noticed the large bumps on my
knees and ankles. I had a number of operations to remove the bumps in
my legs when I was fifteen, an operation on my wrists and feet in my
twenties and removal of a bump on my right leg in my thirties. That's
fifteen operations since the age of 15. I'm now 52 and waiting for my
wrists to be operated on later this year. I have a son of 31 with HME
but no operations and a son age 11 with no HME. There is quite a lot
of HME in my family - my Mum had a lump removed from her right leg when
she was sixteen and some of my brothers and sisters and their children
are also affected. My operation age twenty one was at the Bridge of Earn
Hospital, near Perth, when my legs and feet were put in plaster. It was
difficult to walk with car tyres on my plasters - not funny, especially
living at the top of a hill! I hope this is useful and would like to
hear from anyone in a similar situation. My email is francesinfife@blueyonder.co.uk.
From Carol Anderson
Isle of Arran, United Kingdom, 4th June 2003
My six year old daughter who has HME is so tired sometimes and finds
it difficult to concentrate. I would like to hear from anyone else who
has the same problem and how they coped with it. Thank you. My email
is iain@pirnmill.com.
From Theresa Pinson
Valrico, United States, 3rd June 2003
I have a friend who has ME and I am trying to understand things concerning
him because I love him dearly. He is 38 and seems to have emotional problems
to go with it. Is there anyone out there that can tell me how this affects
him as he gets older? Does it worsen? He has not had any surgeries for
at least the last 10 years that I know of but talks about shock treatments
and surgery when he was very young. He still has bones that intrude from
his rib cage and a few other areas. This does not bother me and I want
to love him for the rest of my life. I just want to know more and be
prepared if he will allow me to care and love him. He is very defensive
about his problem. Has a lot of headaches and seems irritable a lot.
Could anyone please help me? Does this progress as they grow older or
does it come to a stop at some point? Do you stay in pain all the time?
He has pride and will not talk to me. I am trying to do some research
so I can understand and love him more and more for a long time. I want
to marry him. Thanks and God bless you all. My email is Lucki13@aol.com.
From Chris
NSW, Australia, 18th May 2003
I am a 52 year old man, who has ME and had my first operation at the
age of five, in 1957. My ME is not hereditary. I have three daughters
who are ME free. I have had around 26 exostoses removed and must have
another operation soon. Are there any support groups in Australia? If
so, please let me know. I have never been in touch with anyone with HME.
Thank you. My email is p_geaney@optusnet.com.au.
From Dave & Josie
Blackpool, UK, 16th May 2003
Yesterday, the 13th May marked a milestone in our search for treatment/information.
My wife actually got to see an orthopaedic consultant in Blackpool. Yay!
Fat lot of good though. He said that we should try to find a specialist
consultant in a university hospital and if we find one he will refer
us! So anyone has the name of a good consultant in the north west of
England specialising in Diaphyseal Aclasis (HME), please let us know.
Thanks in anticipation. Our email is dave@wimbournehotel.co.uk.
From Michelle & Mark Sweeney
Ireland, 9th May 2003
Through our GP we were told about the support group. We have also done
some research over the net and would like to know if there are many other
HME families in Ireland. Our email is 1annboland@eircom.net.
From David
Spain, 7th May 2003
Hello, fellows. I'm 24 and I was diagnosed from HME 10 years ago. I've
been operated on twice and I'm about to have a third (probably June).
The first was on the low part of my right scapula, second one on my left
arm (it grew like a needle), and now the third one, on the internal face
of my right scapula. I think this last one is the worst (at the moment).
It slides over the ribs with a continuous pain. If I don't move my arm,
it squashes the sinews, and it also hurts. That's my experience. Just
a question to confirm - is it true that the exostoses continue appearing
even after the period of growth? Do not give up. Be strong. If anyone
knows about a Spanish support group I'd be pleased to hear about it.
My email is david79@alumnos.uva.es.
From Garry
UK, 17th April 2003
Hi I'm Garry, 38, from the north east of the UK. I've just been told
that I have a number of exostoses on my 3rd, 4th and 5th vertebrae. Has
any one got any info please. If they have had surgery, was it successful?
My email address is gazzane@aol.com.
From Ian Duffy
Derby, United Kingdom, 12th April 2003
Hi everyone. I'm 33 years old and have lived with 'bumps' since I was
about five. Everyone on my paternal grandfather's side of the family
has bumps. My sister, Dad, Dad's sister and brother plus two cousins
all have them. I think it was expected of me to get them. Until I found
this website I didn't realise there was a possibility of *not* passing
them on! We regard them as a rather quirky family disorder rather than
something to be worried about. I used to have about 40 or so when I was
a teenager. These ranged in size from sharp tiny ones on my fingers that
you had to feel for, through marble sized ones on my ribs, up to half-tennis-ball
sized ones on my legs and right hip. I've also got one in my right elbow
which has dislocated the joint and made my right arm 4 inches shorter.
I used to be very self-conscious of my elbow as a teenager when wearing
T-shirts but I have now realised how few people actually notice, including
work colleagues. The bumps on my legs and hip were removed in two operations
when I was 17-18 years old. I was always bruising them and I was always
wary about bending down and straightening up too quickly in case something
would 'click' and leave me rolling around on the floor (...not laughing!)
Many of the ones on my fingers have just disappeared over time and the
few remaining don't bother me. The ones on my ribs also just disappeared
gradually over my teenage years. There's no sign at all of them now and
yet I had two that stuck out at least 1/2 inch! I notice that there are
some postings from other people with bumps on their ribs. I would say,
if they don't hurt and their appearance doesn't bother you too much then
you can always put off having surgery in case they go away by themselves.
My elbow was considered too risky to operate on at the time (about 1988)
so I have lived with it ever since. I only discovered this web site today
and I had no idea that the condition was so well known. I can't believe
I am reading about my own problems on someone else's website! I had another
couple of ops last year to clear up a few niggly bumps on my ankles and
shoulder and have begun to get my hopes up that with the advance of modern
science that my elbow might be treatable after all. The forearm lengthening
technique described by Peter Burge looks almost exactly what I always
imagined I needed but I note with slight disappointment that it is not
recommended for adults. Ho hum. At least I can be thankful that in all
other respects I am healthy and I have no problems walking. None of my
bumps or anyone in my family I know of has had one turn malignant. I
would love to hear from anyone who also has HME. I would be particularly
interested to know of any adults who have had corrective surgery on a
dislocated elbow. My email is iduffy@ntlworld.com.
From James Hissey
Berkshire, United Kingdom, 8th April 2003
Hi to all, my name is Jim. I have read all of your testimonials and knew
I was not alone with HME but never, never realised there were so many
people with this. My thoughts go out to you all. I am the eldest son
of a family of four boys and a sister with HME; my youngest brother is
the only one not to get it. My brother David suffered really badly as
a baby with deformed legs and arms and underwent many major operations
to repair them. My brother Chris also had some removed from his shoulder
in his 20s. I have two beautiful daughters, 21 and 23, both with HME,
but although it doesn't really affect them, I am looking for the tell
tale signs in my grandson, now two and half. I am now 50 and after some
40 years of operations for removal of bony spurs, correction of gait
and all the other stuff that goes with it, I am now due for surgery again,
the fourth operation in as many years and the second attempt at correcting
the difference in my legs. Spring 2003 at the Nuffield Orthopaedic Centre,
Oxford, UK, single cut distal-femoral osteotomy. What to say? Something
inspirational - try to keep fit, never give up, scars don't hurt, they
fade away! Best wishes to you all. I'm not an expert on the subject,
but...!! My email is jameshissey@hotmail.com.
From
Paul Tansley
Sheffield, UK, 8th April 2003
Just to update you on my son's progress towards the operation on his
ankle which will involve having a fixator for many months, that the operation
will take place at the Sheffield Children's Hospital on May 28th. I will
update you on any progress throughout his recovery.
See below for Paul and Gillian's original message.
From Kim
Virginia, USA, 27th March 2003
I've been exploring the internet. I was diagnosised with HME 40 years
ago and have had 35 surgeries. I would love to hear from others. You
can email me at KIMCOULTER@peoplepc.com.
From Berit
Norway, 17th March 2003
I found you in the internet. My son Alexander is 21 months and he has
been diagnosed with HME. We found his first exostosis on his scapula
about one year ago and the second one on a rib. But both have disappeared.
Is this normal? Now we have found a third one on his leg bone; very near
the growth centre, near his ankle: this concerns me quite a lot. I have
been reading your noticeboard and find it very interesting. I hope someone
can answer my question. You can email me at thor@mcclean.no.
From Debbie
United Kingdom, 12th March 2003
CAN YOU HELP? We found out this week that my youngest daughter (12)
has an exostosis in her neck which is pressing against her spinal cord.
Does anyone have any information or experience of this? You can email
us at mickerrington@blueyonder.co.uk.
7th
April 2003: Debbie emailed us to say that her daughter has had the exostosis
removed and is now home and making a good recovery.
From Fiona
Brighton, United Kingdom, 3rd March 2003
My 3 year old daughter has exostoses - lumps on both knees and, I am
told, on one of her wrists (not visible). I've been given very sketchy
information on this condition. I'm told the lumps shouldn't impair her
movement and, at the last consultation, that they had not got any bigger.
Personally I feel that they have got bigger and that they are altering
the formation of her legs, feet and walking. I don't think she is as
active as other children. I would be very grateful if somebody could
recommend an expert doctor/clinic on this condition so that I could get
another opinion. My email is germaine_uk@yahoo.co.uk.
From Susan MacDonald
Dumfermline, United Kingdom, 20th February 2003
I have had several operations over the years to knees, ankles and one
to my shoulder blade. Recently I have started to get sharp twinges in
my ribs and my ribs feel generally tender. My doctor says it is very
unusual to have exostoses on the rib area. Has anyone else had this?
My email is susan.macdonald@bushinternet.com.
From Gilda
Buenos Aires, Argentina, 13th February 2003
Mi hija de 14 a�os tiene osteocondromatosis m�ltiple cong�nita. Quisiera
tenerla informaci�n de un congreso que se realiz� a fines del 2002 en
USA, creo que en California. Agradezco a todas las que idearon este espacio.
Mi hija fue diagnosticada cuando ten�a 7 a�os. Reci�n ahora me entero
de la existencia de este grupo. Hasta ahora ha tenido algunos inconvenientes
pero no ha sido operada. El m�dico que la atiende corresponde al Hospital
Garraham. Siempre recuerdo cuando me dijo "es preferible que llore
porque le duele si se golpea a que no haga una actividad y se sienta
distinta a los dem�s. En esa ocasi�n le permiti� usar patinetas. Yo sufr�a
cada vez que mi hija sal�a a patinar. Vivo sufriendo cada d�a y cada
noche cuando me dice que le duele algo. Vivo con la espada en el cuello
no sabiendo qu� va a pasar ma�ana. De todos modos, este verano ha ido
al gimnasio y hasta ha hecho pesas. Bueno, se dio el gusto y ma�ana vamos
a verlo al m�dico pues hace una semana que est� con dolor en sus brazos.
Pero recuerdo sus palabras "que haga todo lo que pueda. Ella se
pondr� el l�mite". Les cuento que mi hija no tiene hasta ahora problemas
con el crecimiento. Mide 1,52 mt. y pesa 52 kgs. Un abrazo a todos. Espero
vuestras noticias. My email is nosotrasyellos@ciudad.com.ar.
My 14 year old daughter has multiple congenital osteochondromatosis. Do you perhaps have any information on a US congress that took place in 2002, in California I believe? My thanks go to everyone who thought up this site. My daughter was diagnosed at seven years old. I have only recently found out about the existence of this Group. Up to now she has had some hassle/inconvenience/discomfort (with HME) but has not been operated on. Her attending physician is attached to the Garraham hospital. I always remember his telling me "It's better she cries when she bangs and hurts herself, rather than not take part in any activity and feel different from everyone else." At that time he allowed her to go skating. I suffered every time my daughter went skating. I continue to suffer day and night when she tells me that it hurts her somewhere or other. It's like having a knife at your neck, not knowing what's going to happen tomorrow. Anyway, this summer she went to high-school and has coped up to now. Well, at least she's motivated; and tomorrow we're going to see the doctor, as she's had pain in her arms for a week now. Still, I remember his words "She should do everything she can. She will set her own limits." I told them that up to now my daughter has not had any growing problems. She measures 1.52m in height and weighs 52 Kg. With best wishes to you all. My email is nosotrasyellos@ciudad.com.ar.
From Esme Morley
Nottingham, UK, 11th February 2003
I am 27 and have three children aged 10, 8 and 4. I and my first two
children have HME. We have not found any growths on my third as yet.
My first growth was found when I was three, my first removal was aged
nine. I have been having them removed every couple of years since then
from all areas of my legs and arms. I have now developed problems in
my pelvis. From my x-ray, I have a growth at the very top of my leg which
is hitting my pelvic bone when I move. Walking is not too much of a problem
at the moment, although it is affected; mostly it is in a sitting position
that I am restricted, like driving. I have big problems lifting my foot
onto the clutch. My consultant has not operated on anyone there before.
He would have to go in from the upper inside leg and thinks that there
are too many nerves, tendons, veins etc in that area to operate successfully.
I would like to hear if anyone else has had this done or has similar
problems.
Also, has anyone heard anything to contradict the fact that the growths
should stop growing when the rest of the bones stop growing? I know that
this is not actually true as I find new ones all the time. Am I a one
off or is this commonplace? I'd like to hear from anyone who can advise
with any of the above or wants to swap experiences. My email address
is esandwayne@yahoo.co.uk.
The issue of exostoses continuing to appear after growth has stopped
was raised here by Theresa Schneider a year ago and was also mentioned
by several members at Conference 2001. See
below.
From Tina Read
Merseyside, United Kingdom, 16th January 2003
I have HME and I have been part of a genetic study carried out at Oxford.
The genetic mutation causing my condition was found and my son was genetically
tested and found not to have the condition. Despite this result he has
developed a bony lump on his leg and my GP wants him to be referred to
a consultant. Can anyone suggest a consultant orthopaedic surgeon in
the North West of England (ideally in Merseyside region) to whom my GP
could refer my son? My email is tinaread@btconnect.com.
From a Concerned Mom in the U. S.
USA, 31st December 2002
My son "Josh" was diagnosed with HME (or Osteochondromatosis
as we call it in the U. S.) when he was eight years old. He is now 15
and has had five tumors removed since then. He will possibly have another
removed from his wrist this summer. His tumors were removed from both
lower extremities, a rib and from a finger. Every time he goes through
a growth spurt I wonder where the next one will pop up. We do have great
comfort in knowing that he receives the best of care. He has been a patient
of Shiners Hospital for Children for every surgery. They have dealt with
this disease for years and seem to be very knowledgeable. Recently he
was in an accident and broke his leg. The surgeon who set the bones stated
that due to the disease his bones are brittle and his may take longer
to heal. Can anyone out there volunteer any information on this? Shiners
did not inform me on this matter. Any advice would be appreciated. You
can email me at boncincy2000@yahoo.com..
From Helen and Tony
Lancashire, UK, 29th December 2002
Hi! My name is Helen and my husband's name is Tony. We wrote to the noticeboard
earlier this year and a few people got back to us. We live in Lancashire
and would like to hear from anyone with young children who have (or may
have) HME. We have a little boy who may have HME. We could not get back
to the people who emailed us because our computer went to the sky above
but it's better now we hope. Bye for now - hope to hear from you soon.
My email is Helony@intack5.fsnet.co.uk.
From
Paul Tansley
Sheffield, UK, 12th December 2002
I am 43 and have suffered from Diaphysial Aclasia (HME) all my life.
I have five children aged 21, 19, 15, 4 and 2 years old. My younger boys
are not showing any symptoms at present although my elder three do suffer
from the disease and have had numerous operations throughout the years.
I could write a text book about all my family's experiences with HME!
My 15 year old son Paul is still growing and it's him I would like to
concentrate on. Paul has had many operations, which include both knees,
both lower legs and two fingers. Shortly Paul will undergo the biggest
operation to date at Sheffield Children's Hospital to remove a massive
chondroma on his left ankle. The operation is so complex that it took
five consultants to work out the best way to remove it and the operation
will take away almost all the ankle bone, leaving his left leg three
inches shorter than the right. This will require a fixator and it will
be a long and painful process to lengthen his leg which should take place
in early 2003. I will keep you updated on this and if anybody is interested
in my experience with HME then I may not be a doctor but 43 years of
personal experience with this condition gives me a lot of knowledge.
My email is pt014h0011@blueyonder.co.uk.
See above for more recent news.
From
Dave
Blackpool, UK, 5th November 2002
My wife is 43 and has had Diaphyseal Aclasis (HME) all her life. She
is 4ft 10in tall, her height being attributed to Diaphyseal Aclasis.
Whilst living in Cornwall everything was fine. We had a doctor who was
sympathetic and my wife regularly saw a geneticist who took a great interest
in her condition. My two sons, now in their twenties, also have the condition,
the elder to a greater degree than the younger. The work situation has
now meant that we have moved to Blackpool in the North West, where, when
my wife eventually found a doctor to take us on, we found apparent total
apathy towards the condition. The doctor, when told by my wife that she
had Diaphyseal Aclasis, asked "Who did you catch it from?".
I have noticed that her condition is deteriorating - more and more she
complains of pins and needles and is of course in constant pain. As she
cannot convince her GP as to the seriousness of her condition, we cannot
get her referred to a consultant and so are unable to get any further
assistance. Is there anyone in the North West of England who can help?
My email is dave@wimbournehotel.co.uk.
From Rachel Belk
West Yorkshire, UK, 15th October 2002
It's been great to find your site and learn more about possible problems
with exostoses from other people's experiences. I have a large exostosis
at the top of my humerus which has not caused major problems in the past,
but has recently started to give me more pain and other symptoms. I am
not currently on regular follow-up - my orthopaedic consultant Mr Reeves,
at St James's Hospital in Leeds has now retired. He was, by all accounts,
very good and I certainly found him very approachable and balanced in
his views. I am planning to go and discuss these new symptoms with my
GP, but want to be able to give them some idea of consultants who are
particularly experienced in this condition. I would be very grateful
if anyone could let me know of consultant orthopaedic surgeons or even
neurologists (as the symptoms are mainly referred nerve pain down my
arm) that they have good experiences with - I live in West Yorkshire
so particularly in this area, but it may be possible to see someone slightly
further afield such as Lancashire or South Yorkshire (I noted Prof. Saleh
from Sheffield Northern General in someone else's message). I can be
contacted at rachel.belk@christie-tr.nwest.nhs.uk (although
I work within the NHS, it's not always easy to find out about specialists
in a totally different field!). Thank you!
From Denise Samari
Shrewsbury, UK, 13th August 2002
I wrote to this noticeboard about
a year ago about my son and since then our email has changed. I would
like to thank everyone who has sent emails back to me and for the regular
newsletters since joining the support group. I am not mentioning his
name in this email as one night when he was sleeping over at a friend's
they typed his name into a computer and immediately came up with this
noticeboard. As you can imagine, he felt very embarrassed. Please could
you remove my old notice to save any further problems. [Done!] We
have seen the consultant twice since then and have recently been told
he will have an operation to remove a large exostosis from his right
knee. We are still waiting for the letter from the hospital but have
been told it will probably be day surgery. I hope I get to talk to the
consultant again but at the moment I have no idea what to expect, how
long it will take and how long it will take to recover etc. The day we
saw him he had about thirty people in the waiting room! We were told
last year that he could not operate on the lump that is on the index
finger of my son's right hand because it would cause it to have less
movement. The finger appears to have stopped growing now and he feels
quite down about it. I was wondering if anyone out there has had bumps
removed from their fingers successfully. I guess the real reason I am
on this noticeboard again is that today my son found a new lump on his
ribs and for the first time got really upset about his condition. He
is the only person in the family to have it but must have heard me say
he can pass it on to his own children. We were busy reassuring him that
the bumps will stop growing when he is an adult but this seems far from
the case when I read the noticeboard! If there are any parents out there
with tips for dealing with the emotional side of this condition, especially
in the adolescent years, I would love to hear from you. Many thanks. My new email
address is Samari@btopenworld.com.
From Ian Kehler
Edmonton, Alberta, Canada, 16th July 2002
I am 30 years old and have been through five operations, most of them
in my childhood, but the most recent in 1997. I had a tumor the size
of my fist removed from my hip socket. I was NEVER given any further
information about my condition beyond the fact that I had bumpy "bone
growths". Gee... ya don't say...
This entire web site has blown me away. I can't believe that punching "multiple osteochondroma" into my search engine would yield so much information (I just got a computer). I would like to get in contact with people that are up front about this disorder (I hate the word disease). I have noticed that some growths are growing, and causing new discomforts. The information that I have received today has been very helpful. I have not known anyone else to have this disorder but my mother, and just last week she wrote down the term Multiple osteochondroma for her own knowledge. Scary. What does that tell you! We were just told by our doctor that they are "bumps", and that is all that we have understood about it. I have always felt like some kind of "medical rockstar". Any new doctor I visit always has to pull out their text books when I walk in. Yeah, it's a pain in the... well... numerous places ;-), but for the most part I have persevered just fine. My left arm is roughly 12 inches shorter than the other, and my left leg is about 3 inches shorter. I walk with a noticable limp when I exert myself and I start to get stiff.
This is weird talking about it like this, but regardless of my ummmm... disability, I have accomplished some pretty cool things. I have been a contracted artist for seven years doing dinner theatre in Canada, and other venues. I am a "professional singer" (it may not pay the rent right now, but I got some sensible shoes!) And I work as an educational tour co-ordinator for a Canadian travel company. I guess what I am saying is that I was teased a lot from other kids growing up because I was physically different. As a lot of these young kids on this web site probably face daily. (Kids are SO cruel.) But if there is one sure fire way to alleviate ignorance, it is through education. This web site is a God send. My email is shangrilaboyz@hotmail.com.
From Susan MacDonald
Scotland (UK), 14th July 2002
I am 33 years old and have always known I had "extra
bones". I had three operations in my teens although no one ever
explained why I was experiencing pain and no name was ever given to the
condition. At the end of last year I was referred to an orthopaedic consultant
who happened to have a special interest in this area and was finally
given a diagnosis and explanation. For four years I have been suffering
from ME. As well as lots of other symptoms I am chronically tired and
ache all over. I am now wondering if there is a connection? My consultant
says not enough is known about either condition so he cannot say. Is
anyone else in the same position? If so, how has their ME coped with
surgery? I am due to have an operation to my ankle and am concerned it
may cause my health to deteriorate. Susan My email is Susan.MacDonald@bushinternet.com.
From Megan Gairns
Scotland (UK), 9th July 2002
My name is Megan Gairns and I have had HME since I was 18 months old.
I am very grateful as I feel that I have got off with it lightly after
I read some of the people's case histories. I have only been through
one operation on my leg as one of my lumps caught on to the muscle which
made the muscle go in and out (which was a brilliant party trick). I
would really just like someone to talk to. If you want to get in contact
with me my email address is megangairns@yahoo.co.uk.
Sometimes I feel as if I am the only one in the world who has this but
I have to keep on reminding myself that there are a lot of people worse
off than me and I should be grateful for what I have.
From Diane M Bower
14th April 2002
My daughter is 19 years old with multiple osteochondroma. She was diagnosed
at age four and has had many surgeries since the age of nine. Right now
she has a tumor on her hip and pieces of it are breaking off and floating
around in her hip/pelvic area. She is in a lot of pain with this, but
is very reluctant to go through another surgery at this time. We were
wondering if anyone else has had this problem with this type of osteochondroma.
She has heard much the same as far as the fact that these were supposed
to stop when she stopped growing, but they seem to continue to grow.
Thank you for the opportunity to see that she is not alone in this. dianem47@juno.com.
From Kimberly McDaniel
Toledo, USA, 27th January 2002
I posted about a year ago.
I've been very frustrated lately with medical professionals... it just
seems like they don't want to do anything, while my daughter is in pain
everyday. Any suggestions would be greatly appreciated. Thanks, Kim.
My email is McDanieldorkdoof@aol.com.
From Glynis Manning
United Kingdom, 24th January 2002
Hello, my name is Glynis and I am writing on behalf of my sister Julie
(43) and her daughter Rachael (16), both of whom have HME. They don't,
unfortunately, have internet access, so I'll pass information on to them.
They live near Newark in Nottinghamshire and attend hospitals in Grantham
and Lincoln.
Both are currently awaiting further operations and I am very keen to hear from anyone who is particularly pleased with their consultant/hospital, especially if they are treating more than one or two patients. Julie's surgeon seems concerned about the complexity of her next operation, as he has no experience of removing a lump growing between the surfaces of the two bones just below her knee, which she has at present. Rachael is waiting for her next operation also. Our parents live in Sheffield, convenient to the hospitals there. Julie would be prepared to travel to get a second opinion and maybe continuing treatment.
Both are experiencing a lot of pain at present. Julie has recently been to the pain clinic at the hospital and their final option was to use Morphine patches. After about a month, she seems to have become accustomed to these and feels she no longer gets the relief she got at first and now probably needs a higher dose. Has anyone else used morphine? She relies on sleeping tablets to get any sleep at present and is becoming desperate. Does anyone have any advice/common experience/etc. She has used TENs. Has anyone had any success with acupuncture? I hope to hear from you. My email is glynismanning@devonvilla.freeserve.co.uk.
From Naiomi
Canada, 16th January 2002
I've had HME since I was two years old and now I'm 22. I have had surgeries
on my finger, wrist, shoulders, legs, and now my ribs. My rib surgery
happened just a few months ago. My father has had HME since birth and
now he's in his mid-50's. Still to this day his exostoses are still growing
and causing him plenty of pain and discomfort. He's had surgeries on
his hands, legs and shoulders numbering around 30. He lost count quite
awhile ago. As Canadians living in small towns most of our lives, we've
never had the opportunity to meet other people with HME, outside of our
own family that is. So, if you are interested in exchanging HME experiences,
then please email me at ronswiffey@netscape.net or
my father Stephen Lyle King at lking316@hotmail.com.
Mr
King wrote on 7 October 2002: "I have now moved from British
Columbia to the Yukon. I was born in Nottingham, England in 1946 and
moved to Canada in 1951. My first surgery was in 1964 and carried on
ever since..."
From Gilberto Barata
Rio de Janiero, Brazil, 8th January 2002
Hi everyone! It is a pleasure to contact all of you with the same concerns
about HME. I am a Brazilian dad that belongs to this worldwide concerned
group committed to the same objective. I have a daughter Tain� Barata
that has already had surgery twice on her left wrist for a big lump that
was blocking her hand mobility. Fortunately, the last surgery in January
1999 helped to unblock the movement in her arm significantly, but not
totally yet! So, my wife and I are very concerned with her height. She
was born on 9th December 1990 and is now 11 years old. Her height is
1 m 28 cms (4 feet 2.5 inches) and her weight about 22 Kg (48.4 lbs,
three and a half stone). The endocrinologist arranged some tests to check
out the levels of her hormones. All of tests were normal! In spite of
the orthopaedic doctor telling us not to be too concerned, I am sure
everyone will agree that anything unusual in this kind of condition seems
a serious matter to those involved. We would be very happy to hear from
anyone with a similar experience. My email is gilbarata@hotmail.com.
In the UK, most girls of this age are between 121 and 162 cms in height.
From Claire
Manchester, UK, 4th January 2002
Hi I am 28. I was wondering if anyone knows the difference between Ollier's
Disease and HME. I was diagnosed with Ollier's back in 1976 but have
often thought I was misdiagnosed. My former surgeon died a few years
back and trying to get anything done along the lines of X-ray/MRIs on
the NHS is a nightmare. When I have spoken with other Ollier's sufferers
I appear to have come off lightly and need to know if my diagnosis was
indeed correct. This is increasingly important as I am now pregnant with
my first child. Prior to conceiving I did seek the advice of a geneticist
who basically searched the Internet in the same way as I have. My variant
of Ollier's appears to be non-hereditary whereas the statistics for HME
appear to be higher. Can anyone offer any information at all or even
point me towards a decent specialist in the North West. You can contact
me at mail@agius.co.uk. Many thanks.
From May Latham
UK, 22nd November 2001
Hi! I am 28 and living in the UK. I have lots of multiple exostoses and
have had a number of operations. My condition as far as I know is not
hereditary nor did I know anyone else with MHE (let alone a support group!)
until a year or so ago when my Dr suggested I look at the Internet to
find out more information. The first site I found was the MHE childrens
site 'lumpy bumpy bones'. Reading their stories was overwhelming to me.
I wished I had known as a child that I wasn't the only one and that there
were others with the same thing I had, experiencing the same kinds of
things. I still have complications and bones that seem to grow - a month
ago I had another large exotosis removed from above my left knee which
I can gladly say has gone well and I am glad I did have another operation.
Fortunately I am still able to lead a normal life, most can only see
the scars from where my extra bones were removed and I manage to do most
of what everyone else does. I have noticed I have varying pain and stiffness
from day to day in different places but for me I personally have always
found regular exercise has helped and in particular swimming. I am returning
home to Queensland Australia at the end of this year and I would be interested
to know if there are any groups set up there that anyone knows of? Please
feel free to email me may_latham@hotmail.com.
Best Wishes.
From Susan Steggles-Cole
London, UK, 16th November 2001
I had a great time in Birmingham.
It was fantastic to meet in person so many people the same as me :o)
There were so many people who gave me email addresses to keep in contact
that I have decided to start an email chat group. Basically people register
with the chat group and then every email sent to UKHME@yahoogroups.com
will be sent to everyone that has registered with the chat group. If
people want to join they should go to http://www.yahoogroups.com and
in the search box they should type UKHME. The letters must all be in
capitals. They must then fill in the registration details which will
be sent and approved.
Susan also has a message further down this page.
From Karen Newbitt
Christchurch, New Zealand, 8th November 2001
Hi, my name is Karen Newbitt. I have multiple spurs and so does my son.
He has had several removed from both legs, leaving them very badly scarred
and disfigured. I would love to talk to anyone who also suffers from
this because I find it at times very debilitating and annoying. I would
love for someone to write me and give me some information on this as
well as talk over some of the pitfalls. This would be much appreciated.
Your friend with exostosis, Karen. My address is
Karen Newbitt
58 Harrow Street
Linwood
CHRISTCHURCH 8001
New Zealand
karenslighthouse@hotmail.com
From John Elias
Toronto, Canada, 3rd November 2001
I am 32 years old and have HME. I have many exostoses throughout my body
and have undergone three surgeries. I'm very physically active and often
feel aches and pains because of HME. Recently I visited the chiropractor
in my gym because I continually injure my right leg. For several years
I thought the problem was HME. The chiropractor treated me several times
with massage and sent me for x-rays. She also showed me exercises to
strengthen the stabilizers in my knees. After doing the exercises for
about a week I noticed much improvement in my right knee. I feel it is
very important that people with HME consult a good chiropractor and monitor
the exostoses. A chiropractor will look for remedies other than surgery.
I have realized that exercise and stretching can help my condition. I'm
wondering if nutrition can help. Is there any information on how nutrition
may help to minimize inflammation of exostoses? If you have any questions
or information please write me at jelias30@hotmail.com.
Good Luck!
From
Theresa M. Schneider
USA, 2nd November 2001
I am experiencing pain in my left upper ribcage. I had 4 tumors removed
along with pieces of ribs when I was younger. You can actually see the
indented hole from the missing rib since they were right in a row. For
the past two years, I have experienced pain through this area. The doctor
feels it is just something I have to live with and there is no treatment
except anti seizure medication. He feels the surgery may have damaged
my nerves or when the colder weather comes, the scar tissue becomes inflamed
pressing on the nerves causing seizures. Sounds quite complicated, but
I was wondering if anyone else has similar side effects from exostoses
removed from the ribs. My problem does seem to alleviate during the summer
months.
I am currently experiencing pins and needles as well as reoccurring numbness in my lower left leg. I did have a large exostosis removed as a teenager that grew around my main nerve in my leg, requiring some nerve repair as well. As of late, the tingling sensation is back as well as pain. I can feel something snapping over the bone when I move my leg. I am now 39 years old and I thought all these problems were suppose to end when I became an adult. It does not seem to be the case. I am scheduled with an orthopedic surgeon next week to take a look. In many past times I have had check ups, the doctors tell me that the decision of surgery was mine. The thought of having another operation to remove the exostosis again is very distressing. I am not really sure what to do. Is it better to live with the pain and discomfort or to go ahead and opt for surgery? Are there other adults who find themselves requiring surgery to remove tumors that were supposed to have stopped growing?
I was told by my doctor years ago that I would experience pain in one place or another every day. He had studied in Germany and Johns Hopkins, so he was very knowledgeable about HME. He was right. Some days my wrists ache, or my fingers hurt. Many times my shoulders feel stiff. Many times my knees and lower legs hurt and most of the time my ribs ache. Does anyone else have similar feelings each day? How do you determine when to see a doctor or not?
My apologies for all these questions. After 39 years of having this disease, to find other people who also have it has been like a Godsend for me. Sometimes I think I am going crazy with all these little aches and pains. If anyone has any input or suggestions for me, please email me at theway@us.ibm.com. Thank you.
Some of our members who attended Conference 2001 also told us that they had lumps which first appeared or got larger after the age of 20. What Theresa is saying sounds similar. Although this appears to be something that happens, please make sure you read our section on Tumours.
From George Gray
Birmingham, UK, 15th August 2001
I would be interested in hearing from anyone (or anyone with a relative)
with HME who has developed a malignancy (chondrosarcoma or osteosarcoma)
as a result of their condition and at what age. Clinical advice on screening
for malignancy in HME seems confused and contradictory, so I would be
interested to know if anyone has been given any advice on the matter.
My email address is george.gray@breathemail.net.
Visitors may also be interested in the sections on Tumours and Suspicion of Malignancy in the "More About HME" pages of our web site. Both mention the warning signs to look out for.
From Adam Grisenthwaite
Manchester, UK, 31st July 2001
I am an 11 year old boy and I suffer from Osteochondromata. Up to now
I have had four operations and I am due for another. This one is a little
different because there is a risk of me being left with foot drop. If
there is anyone out there with the same problem please write back. My
email address is lgrisenthwaite@onetel.net.uk.
From Roxanne
New Castle, Pennsylvania, USA, 28th July 2001
My son Gino is three years old and has MHE. His legs bow inward, he has
a lot of bone growths on his body. We take him to the Children's Hospital
in Pittsburgh, Pa. where he sees Dr Yaw. They said he will possibly have
surgery at the age of 10 to 13. My husband was born in Italy and adopted
to the States. I am Italian and Greek. There are no signs of MHE on my
side. My husband shows no signs either. I have two other children 19
and 17 who show no signs of MHE. My son Gino is growing fine now but
I am concerned. Is there any hope or information that may help stop these
growths? We live in a very small town - New Castle, Pa. There are two
other cases besides Gino's, both cases full blooded Italian! Thank You,
Roxanne. My email address is geemar22@adelphia.net.
From Sarah Cook
West Yorkshire, UK, 22nd July 2001
My name is Sarah and my son Jack is 4 years old. He has HME and had his
first operation in August last year to remove a lump from his left wrist.
By January it had grown back but this time it was three times bigger
than the one that was removed. I took Jack back to see the specialist
who told me that they had removed the growth plate and that it was normal
bone growth. Because of what the specialist had said, I knew something
was wrong. When I got back home, I rang my GP and asked for a second
opinion. When I took Jack for the second opinion, this time the specialist
said Jack's growth plate had been removed when it should have been left
alone as it had nothing to do with the lump. Now because of this the
left bone in Jack's left arm has stopped growing while the right bone
is growing normally. Jack's elbow will dislocate in a few months unless
we operate now. But if the specialist operates now to remove the lump
and reconstruct his arm, the bones in his wrist will fuse together and
he will lose the movement he has. If we leave it, his elbow will dislocate.
They will operate on the elbow but this will fuse together and he will
lose the movement there. The specialist would not decide. He has left
it up to me and Jack's dad. How can someone like me decide when the specialist
is supposed to know more than me? I would be very grateful for any feedback
or advice to help me. Jack will have to live with the decision I make
now for the rest of his life. Also does anyone know anything about a
Prof. Saleh? I was given his name from America. They said he knows a
lot about HME. He is working at Sheffield Northern General Hospital.
If anyone can help I would be pleased to hear from them. My email address
is CookScoins@aol.com.
From Lorell Freeman
Norwich, UK, 28th June 2001
Hello, I'm 22 and have had HME all my life. I was wondering if there
was anyone who has had a fusion of the hip. I'm due to have this surgery
next year and am very apprehensive about having this and not sure if
I want to go ahead with it. If anyone has any information, good or bad,
then I would be very grateful to hear from you. My email address is lorellfreeman@hotmail.com.
From David Power
UK, 8th May 2001
Our son Christopher age 14 was diagnosed when he was 5 years old. His
'lumps' have been getting larger every year especially the last two years
during his growth spurt. We were hoping he was going to avoid surgery
but unfortunately it looks like he may need operations on his right arm
and right leg (couldn't be at a worse time as he will be going into Year
10 at senior school next September and starting his GCSE work!). Anyway,
at the moment we are being seen at Russells Hall Hospital, Dudley but
have been recommended by my physiotherapist to ask for a referral to
the Woodlands Hospital, Birmingham. Has anyone got any info for us re
consultants etc at the Woodlands? My email address is david.power@tinyworld.co.uk.
From Sam Aynsley
Cornwall, UK, 25th April 2001
Hi. My name is Sam. I am a twelve year old who suffers from multiple
hereditary exostosis. I was diagnosed at the age of four and ever since
I have been suffering more and more pain. I am lucky, seeing that my
condition is not as bad as some people's on this noticeboard. I have
only ever had one operation on my finger. However the exostosis is re-growing.
I might need an operation on my wrist - one of my bones is longer than
the other. I have many bony lumps on my legs which restrict my movement.
Most of my pain is just below my hips. I have not developed any tumours
yet.
My main problem is waiting times for an appointment with my specialist. I have been waiting for an appointment for a CT scan since early March and have just received a letter, confirming my appointment to be on the 4th of June. Also, in late January, my leg and back specialist's registrar referred me to a hand specialist. Seeing he had little time, he said that he would send me a letter explaining the problem. No letter arrived. I was left for months wondering what on earth was wrong with my hand. I live in a county (Cornwall) with only one major hospital. I think that if a new hospital was built, rather than the old one being improved, waiting times for outpatients would be far shorter.
Only today have I learned all the effects of multiple hereditary exostosis. My doctors have never explained the effects of what can happen while suffering from it. I am very impressed with this website. It not only helps the people suffering from HME but it also helps their relatives.
If there is anyone who is in the same situation as me, who is having problems with waiting times and their doctors do not properly explain what the effects of multiple hereditary exostosis are, please email me at sjaynsley@hotmail.com.
From Brendon England
18th April 2001
I would like to hear from anyone who has had an exostosis removed from
their femur. I am due for surgery on 11th May. My email address is breno_e_1@hotmail.com.
From
Susan Steggles-Cole
London, UK, 17th April 2001
Hi there! I am 24 and am averaging I guess two or three operations a
year. I know I have quite a severe form of this disease because my dad
has it also and yet has rarely been operated on. I have had every part
of my body imaginable operated on and have researched a fair amount and
so would consider myself quite an expert on the subject. I would however
like to hear from an older person who also has a severe form of the condition
as I would like to know if the amount of operations etc. decreases. I
was told by a so-called "expert" that the lumps would stop
growing when I stopped growing. However the lumps are still growing at
quite a rate and so I now consider this statement fictitious. I would
like to hear from a true expert, i.e. a fellow sufferer, on the subject.
My email address is susan@steggles.net.
From
Kimberly McDaniel
Toledo, USA, 21st March 2001
My youngest daughter Frances was diagnosed with multiple hereditary osteochondromatosis
about one month ago. We noticed many bony growths on her ribs and back
when she was born, but no one could ever figure out what they were until
recently. My Father and Grandmother had limb inequality and both were
small, but I do not know if they were affected because they are both
dead and I cannot get hold of their medical records yet. My husband (Frances'
father) also has limb inequality and walks with a limp. He has never
been diagnosed either. Frances is getting her first surgery tomorrow
on her distal fibula of her left leg. A tumor grew, curved her bone,
and cracked it. I am still trying to learn about this rare disease, and
am interested in corresponding with anyone in the Toledo area (or Northwest
Ohio) who has been affected by this disease. My email address is McDanieldorkdoof@aol.com.
From Iain and Carol Anderson
Scotland (UK), 13th March 2001
I have had many years of experience of HME within my family. Most of
my relatives on my Mother's side of the family have HME with varying
degrees of severity. My Mother had no obvious lumps, but her two sisters
had HME and also passed it on to their own children. In my own case I
had a lump removed from the outside of my left leg which had damaged
a nerve and has left me with a drop foot. My daughter 12 has had exactly
the same problem with her right leg and also had lumps removed from hands,
wrist and left leg - eight operations in all, although she doesn't let
this hold her back in any way. So far no life threatening complications.
My other five children all have HME to some extent. Most of our family
have been operated on in Yorkhill Hospital, Glasgow, Scotland. We did
have contact with a doctor at The Western Infirmary, Glasgow, who was
studying the genetics of HME, but have heard no more. Our daughter also
has Olliers
Syndrome, where two toes on each foot are smaller than normal. We
wondered if there is any connection to HME. Although HME can be painful
at times, we try not to let it limit us in any way and encourage the
children to do likewise. The members of my family who are affected with
HME have a common link through the our family name of "Pottie",
a name we have traced as coming originally from France. We would be very
interested to hear from any one about HME or Olliers Syndrome. Our email
address is iainkilbrannan@yahoo.com.
From Hana Apostolova
Czech Republic, 22nd February 2001
I'm 21 years old. My grandma, father's mother, my father and me have
lumps. Now I am pregnant. I hope I meet a woman or a girl who has HME
and is pregnant now as me too. My email address is hana.apostolova@post.cz.
From Mari S
Yokohama, Japan, 13th February 2001
BIG APPLAUSE!!! to what all of you have done! Thank you, all the members
of HMESGUK, and my admiration, respect, thoughts, and care goes to each
one of you. As many other HME family members should be, I truly appreciate
all your hard work and effort you have done to make this site come true.
Myself (Mari, age 31), and my father, auntie, grandma had all been diagnosed with HME. I am now starting to work to set up a group in Japan, if possible. I have started an e-group (similar to the US based MHE list) called 'HME-Jp' (please visit the URL listed below if you wish to join) and am almost done with the translation of the MHE Handbook (from mheandme site). I'm hoping to find someone who may be interested in getting contact with me to find out more info on HME. People who live in or have lived in Japan, or know anything about Japan (with respect to HME) are the people I need. If there is any info you have, please email me. Wishing you all the very best, thank you all and please take care :) Mari S. My email address is eyeheart@hotmail.com. You may also reach me at hmejp@yahoo.com. Our web site address is http://www.egroups.co.jp/group/HME-Jp.
From Mandy Wilkins
UK, 11th February 2001
My name is Mandy, I have a 10 year old son with HME. He has had eight
surgeries to date and counting!! I am having terrible problems getting
him into a secondary school which has a special unit for children with
mobility problems. Our local authority have gone against the recommendations
of medical physicians etc. and allocated him a school that is totally
unsuitable. I will be going to appeal quite soon, and was wondering if
there was anyone out there who may have experienced the same problems.
My son, Nicholas has a leg length difference, and is particularly affected
on his knees and legs, his last surgery was in January 2001 to remove
a large bone from his knee. There is another on the growth plate that
will have to wait for a while longer yet. We took part in a study of
the condition and were amazed to discover that Nic has in excess of 60
extra growths, and those are the ones that we can see!! I would love
to hear from anyone out there who might be able to suggest anything to
help me with my dilemma. My email address is Mandy.Wilkins@btinternet.com.
From Karen Joseph
Canada, 2nd February 2001
I am a 33 year old mother of a daughter with HME. Justine is 10 years
old and was first diagnosed at the age of 18 months. Since that time
she has had five surgeries, the first at two years and the last just
after her 10th birthday last August. She has tumors everywhere on her
body. At last count she had 38 tumors that we could see or feel. We don't
know anyone with this and would welcome any advice, support or guidance.
Sincerely, Karen. My email address is josephhasz@sympatico.ca.
From Rhonda & Darren Branton
Nova Scotia, Canada, 1st February 2001
Our nine year old son Alex was diagnosed when he was born with multiple
osteochondroma. He had one surgery when he was one year old, the second
at age three and is scheduled for the next surgery for the end of February
of this year, 2001. We would like to learn more about his condition and
link up with other families that have this condition. Our email address
is rhonda_branton@aramark.ca.
From Beverly Penner
Canada, 17th January 2001
I'm a 30 year old mother of three. I inherited HME from my mother. My
brother also has it as does my sister's son. Two of my children also
have it. So far, my six year old daughter does not show any signs of
it. Both my mother and I have had numerous surgeries to remove lumps.
My email address is ditto@mb.sympatico.ca.
From Joan Wald
Alberta, Canada, 28th December 2000
Hi, My name is Joan Wald and I am from Grande Prairie, Alberta. My son
and I have multiple exostoses. I have been trying to find support groups
in Alberta, but I have not yet been successful. I was five years of age
when I was diagnosed with multiple exostoses. I am now 40 years of age
and I have had surgery about 18 times since I was 23 years. My son also
has this bone disorder. He is 19 years old, and had his first surgery
when he was 11 years. Both of us have many lumps. My son has very many
under his kneecaps, so much that he can't bend his legs when he sits.
He has many other spurs throughout his body. There are only four people
in Grande Prairie (population 35,000) who have this disorder. Even though
this disease is supposed to stop in childhood it has not. I am very concerned
especially for my son. I have done some research and all the information
has come from the U.S. I have not yet found any information in Canada.
I will continue in my research in hopes of helping my son. I would appreciate
any information, advice or support which would aid my research. The spurs
continue to grow, they are a constant reminder for us both. Thank you
for your time. I look forward to hearing from someone who shares this
with us. My email address is mayan@telusplanet.net.
From Rebecca Newlands
Australia, 20th December 2000
I am 23 yrs old and so far have had 17 operations for MHE. My mother,
her father and we believe my mother's cousin have MHE. At the moment
our DNA has been sent to Japan where there are geneticists that have
been given funding to look into the disease. We are the first family
that has been able to supply three generations of DNA to these geneticists.
My mother was first told 25 years ago that she had Maffucci Syndrome.
We both have hemangiomas but not as bad as the ones that are described
with Maffucci Syndrome. I am hoping that this will put me in contact
with people that know about or actually have MHE. I would be interested
to talk to you. My email address is rebecca.newlands@apac.dmr.com.au.
From Ricardo Budino
Galicia, Spain, 15th December 2000
Me gustar�a conocer m�s familias espa�olas que no sean de Galicia. Muchas
gracias. I would like to get to know some Spanish families who live
outside Galicia. Thank you. My email address is rbm@marca.es.
From Susie & Rob Stephens
Australia, 19th October 2000
Our daughter Nicola, is six years old and is about to have her first
operation. Neither my husband or I have the condition, so in our case
it is a spontaneous mutation. She is about to have an operation on both
her wrists as the radius bones on both wrists are starting to bow as
the lumps on the ulna get in the way. We are so pleased to have found
this site as we don't know anybody with the condition and the only information
we have is from the doctors. We live on the Sunshine Coast, north of
Brisbane in Queensland, Australia. We would love to hear from anybody
with any information. Thank you. Our email address is ogaard@ozemail.com.au.
From Joanne
USA, 16th October 2000
Hello there, my name is Joanne. My husband, his mother, two sisters and
at least one niece have HME. They have all had a number of surgeries
to remove several of these "bones", my husband being the one
with the most complications. He had one growing on the back of his tibia
and being 18 at the time, dismissed the pain until he could hardly walk.
When he finally went to have it looked at the damage was already done
- the "bone" had caught the sciatic nerve and he had to have
surgery to release it. This was done successfully but permanent damage
was done to the nerve endings in his foot. I am now expecting our first
child. I was wondering at what age I could expect to see any evidence
that the baby has HME. My email address is eightball@sprint.ca.
From Joe Howells
New Zealand, 5th October 2000
Hello, my name is Joe Howells and I am also a sufferer of HME. I was
diagnosed with the condition at 10 months and had my first operation
at the age of 3 yrs. I am now 24 yrs old and have been left quite scared
from my experience. The condition mainly affects my hands and feet but
I have had a very large and debilitating lump removed from my knee joint;
that was the longest recovery time of all, about 3 months in total. I
have had approx. 30 operations up till now but still have a very painful
lump on my big toe. Sometimes I do feel it has grown and thought that
was impossible, but after reading some of the messages here, I find that
this could well be possible. Also, the index finger on my right hand
juts out at a 45 degree angle (pretty ugly, but very useful for pointing
around corners). My wife and I have just realised that our 12 month old
daughter is afflicted with the same thing. This was quite upsetting as
someone once informed us quite incorrectly that HME skipped a generation.
She has already got a small lump on her little finger and we have been
referred to an orthopaedic specialist, but have been told that the waiting
list could be up to 19 months because it is "non-urgent" (that
could just be the NZ health system for you). I would just like to say
how relieved I was to find this support group as it was a shock to find
that I was going to have to go through it all again with my daughter.
I would be grateful for any contact from other sufferers who have recently
found their children have it too, or anyone else who would like to swap
war stories or just have a chat. I would be happy to answer questions.
I now live in New Zealand but was treated mainly in Wales by Mr P Mathews
in Port Talbot hospital. I have tried unsuccessfully to contact him recently.
Good luck to everyone for the future. My email address is joemanz@xtra.co.nz.
From Joel Davis
USA, 29th September 2000
My name is Joel Davis. In the 49 years of my life I've had somewhere
between 30 to 40 or more ot these "bumps" removed, most as
a young child. They are still growing despite what the "experts" say.
I would really love to hear from other MHE people as I have often felt
like the only person on earth with this. I am willing to be of any help
I can to anyone. My email address is joeldavisjr@yahoo.com.
From Betty Heideman
Canada, 15th September 2000
I would be interested in hearing from anyone who is afflicted with HME,
and can be reached at
Betty Heideman
G.B. 94, R.R. #3,
Brighton
Ontario
Canada
K0K 1H0
Email: bettybooope@yahoo.com
From
Roberto Wanderley Nogueira
Brazil, 19th July 2000
My HME comes from my father�s family. I have three children, of whom
two are also affected with HME. It is of my deep interest to be connected
to all who are interested in HME. Knowing people and talking about our
similar problems make it easy to stand and to comprehend the situation
that involves all of us. My email address is jfg1@fisepe.pe.gov.br.
PS You will find me in: http://www.fisepe.pe.gov.br/jfpe1v/quemsomo.htm
From Hanan
Israel, 28th June 2000
My name is Hanan and I live in Israel. Some of my family have exostoses.
I would like contact with people with similar problems. Thank you. My
email address is chananr@hotmail.com.
From Maria
2nd May 2000
I would like to correspond with people of my age around 40 years old
who have multiple exoxtoses as I have, to check the effects as we are
growing older. My email address is wttechnologies@bigpond.com.
From Jodie Thompson
Australia, 10th April 2000
Hello! My name is Jodie Thompson and I am 21 years old. I was diagnosed
at the age of five of having osteochrondmata. We discovered it in my
left index finger which is still noticeable and my left wrist. The one
on my left index finger is not attached to the bone so I have to be very
careful. In 1995 I had an operation on both my legs at the same time
to remove four tumors both above and below my knees. In 1998 I had another
operation to remove a tumor on my right hip/pelvis. I live in Australia
and even though I have a great doctor he still doesn't know the infomation
that I would like to know. I got the condition from my father. My sisters
Sandy aged 18 and Jessica aged 16 also have it. My other sister Bianca
aged 5 has no signs of it at the moment, but it seems only a matter of
time. I am a nurse working in a nursing home at present but soon leaving
there to work in a hospital. Me and my family don't know as much as we
would like about the condition. I also have a bowing in the left arm
where the radius is shorter than the ulna bone. I would like to write
to others and compare stories. My email address is JoLockyer@hotmail.com and
my icq number is 64112528.
From Debbie Errington
UK, 8th February 2000
Hi! We're a family of four with three affected members. My husband Mick,
two girls, Kim aged 12 and Kayleigh aged almost 10, and myself Debbie.
Kayleigh has had one op and will soon need another to correct bowing
and to lengthen her forearm. Is there anyone out there who is experiencing
the same situation or has had recent lengthening surgery? My email address
is MIC@elmave1.freeserve.co.uk.
From Kate Kavanagh
Ireland, 26th January 2000
My name is Kate Kavanagh and I have a 13 year old son with MHE (we refer
to the bumps as 'gangles' - a pet name since babyhood.Is there anyone
else in Ireland with this condition? Sam has had 5 surgeries so far -
3 in the past 12 months as he is now in puberty and the gangles are growing
ahead of him! We live in Dublin. My email address is barcat@eircom.net.
From Karen Stuart
New Zealand, 1st December 1999
Hello, I contacted your group a while ago regarding my daughter who is
now 14 months. She is unexpectedly about to get a very large and fast
growing exotosis removed from her rib and there has been talk of removing
one rib in the process. I am very concerned at this as you could well
imagine. Is there any one out there who has had a child in this predicament
at such a young age? She also has very disfiguring lumps growing on her
gorgeous little hands that will need surgery in a year or so apparently.
I look forward to hearing from anyone regarding this. Our email address
is qtee@xtra.co.nz.
On 2nd January, Karen wrote "Grace is recovering well from her operation, better than her parents at least!"
From Bill Daniels
USA, 20th August 1999
We have set up an online email list for MHE support. By going to http://www.onelist.com and
searching for M_H_E you will find our list. Just join it to get on our
group. Then you just send one email that goes to all the others on the
list. At present there are approximately 20 on the list. Or send me a
message requesting more information. My email address is baseball@midwest.net.
From Sven-Erik Berger
Norway, 15th June 1999
I'm a 37 year old man (with HME) with two kids, a five year old girl
(with HME), and a eight year old boy (without HME). I would like to get
in contact with other people with this disorder in their family, to exchange
experiences and knowledge. We live in Kongsberg, Norway, but with this
technical highway (internet), I suppose contact can be established independent
of borders and continents.
My address is:
Sven-Erik Berger
Veungsdalsvn. 58
N-3615 KONGSBERG
NORWAY
Email: sven-eb@online.no
From Michelle Zelina
14th June 1999
I am looking for more information on "Multiple Hereditary Exostoses" as
I have a family of three people (myself, son and daughter) diagnosed
with this. What we seek to do is to find others out there in the world
today that have this affliction as well as learn EVERYTHING that we can
on the subject. My email address is CheleZ1@aol.com
From Casse Esselink
MI USA, 4th March 1999 (updated 6th July 2001)
I am the mother of an eight year old boy with HME, diagnosed at the age
of two. (Neither I nor his father have this condition.) He has had nine
MHE related surgeries, including having an external fixator on his right
arm. He is to have more surgery later this year (2001). I also have a
three year old daughter who does not show any signs of MHE. I would like
to get in touch with other parents of children, as well as adults with
this diagnosis. I am having difficulty knowing how to cope with this
happy, healthy, playful and wonderful child who has to spend so much
time in hospitals and doctor's offices, and also how to help him handle
his surgeries. As well, I am concerned about the incidence of cancer
and am not able to get good information about it because when I ask questions,
I tend to get "patted on the head" and assured that he's too
young for me to worry about it. I look very forward to hearing from others
in a situation similar to mine. Thank you.
My address is:
Cassie Esselink
109 Washington
Mt. Clemens, MI 48043
USA
Email: conmad@hotmail.com
Can you think of anyone else we should link with?
We know of 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!