I used to have about 40 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 four 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 recently and 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, my elbow might be treatable after all. The forearm lengthening technique described by Mr Peter Burge FRCS, Consultant Orthopaedic Surgeon, (http://www.hmesg.co.uk/resources/pburge.htm) 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.

Ian Duffy

Has anyone else noticed that an exostosis has disappeared? Do let us know if you have.

I am 27 and have three children aged 10, 9 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.

Esme Morley

Research... Research... Research...

Important news – Annette Hames, a Consultant Clinical Psychologist in Newcastle, is doing some research about the experiences of siblings (brothers and sisters) of children with disabilities and chronic health conditions. The aim is to produce written material based on siblings’ personal accounts. She is interested in hearing from any siblings aged 4-18 years. If you are interested and would like your children to contribute, then you can contact Annette at: Sanderson Centre, North Avenue, Gosforth, Newcastle upon Tyne. Annette’s telephone number is 0191 2196800 and her email address is annette.hames@nap.nhs.uk. Please mention that you are a member of the HMESG.

Copies of the following papers are now available. If you would like one, please send an A4 size stamped addressed envelope to the HME Support Group.

"The Hip in Hereditary Multiple Exostoses" D E Porter, M K Benson and G A Hosney

"Hereditary Multiple Exostoses: a qualitative study exploring families' and patients' perceptions of disease impact and self-expressed needs." Maria Fraser and Daniel E Porter

HME School Leaflet, a leaflet aimed at schools with informative and precise information.

Editor's Bit!

A big hello to all of you. It was really great to meet some of you at the Conference back in March. I hope you all found it as interesting and informative as I did.

I have read all the evaluation forms you all so kindly filled out and it was a real pleasure to hear that you all like what we do with your newsletter. But remember if you do have any new suggestions please do not be afraid to write and let us know. We are always trying to improve it and your ideas will be warmly received.

Doesn’t time fly? Here we are going to press on issue 9 of the newsletter and as always my main concern for our newsletters is that I can never have too many articles for it.

Well, you will be pleased to know that I have quite a good little stock of goodies. But don’t think I will let you all off that lightly - I still need material for the next one, and the one after that! I know the majority of you feel that we don’t need your particular letters, but as I have said on many previous occasions, we do. We love to hear from all of you, young and old.

Just moving away from HME for a moment, in August my husband, John, and I are off to see Robbie Williams in concert. In the next newsletter I will let you know how it was. Hey, what a great way of getting a mention in the newsletter next time. Is anyone else going to any music concert or festival during the summer they would like to tell us about? It doesn’t have to be a huge article, just a few lines to go in our “out and about with” column.
Anyway have a great summer and don’t forget to keep those letters coming in!

Debi Roper

UK HME email chat group

To join this interesting discussion group – go to http://www.yahoogroups.com and type UKHME in the search box. Then fill in registration details which will be sent and approved.

We want to hear from YOU!

Submissions of articles and comments to:

Debi Roper
HME Support Group
PO Box 395
Headington DO
Oxford
OX3 9WF

by the end of September 2003. Thank you.

Disclaimer

Please note that any views expressed herein, by individual group members, are not those of the Group as a whole and separate entity.

Moving House?

Please don't forget to let us know when you change your postal address, telephone number or email address. Thank you!

HME Support Group

HME Support Group
PO Box 395
Headington DO
Oxford OX3 9WF
United Kingdom

Tel. +44 1438 861 866

Email: support@hmesg.co.uk
Web: www.hmesg.co.uk/

HME Support Group Trustees
Judith Fletcher	National Contact Midlands/Wales 0121 742 3078
Steve Harding	Treasurer
Sarah Nicholls	Secretary
Debi Roper	Newsletter Editor
Pat Savage	National Contact South 01305 772225
Dawn Searle	Fund Raising
Helen Small	Chair
Stephen Watson	National Contact North/Ireland 01204 699984

Previous: Conference 2003
Back to: Newsletters