Copies of this paper are now available. If you would like one, please send an A4 size stamped addressed envelope to HME Support Group, 1 North Place, Headington, Oxford OX3 9HX.

Diclofenac

In the last newsletter Debi raised the question of whether Diclofenac might have a detrimental effect on bone healing. One of our members has been doing some research into this and it seems that the only studies that have been published were in America and Germany. One said that Diclofenac (as with all NSAIDs - non-steroidal anti- inflammatory drugs - including Ibuprofen and Aspirin) does slow down the rate of bone healing, but did not specify just how much the rate was slowed down. Also, the study was carried out in rats, not humans. The other study contradicted these findings completely! Some Orthopaedic Surgeons have taken the decision not to prescribe NSAIDs after surgery where the bone has to be broken, whereas they are still prescribed post-operatively when exostoses are removed. However, it still seems to be down to the individual surgeon's preference. NSAIDs provide very good post-operative pain relief, with the alternatives being mainly paracetamol (not always strong enough), or taking opioid analgesics (eg. codeine, dihydrocodeine, morphine).

Silicone Patches?

A question from one of the Committee, also in the last newsletter, was whether silicone patches helped scar tissue. The same member as above has looked into this for us and it seems that silicone patches are only effective on new scars and do take quite a while before an improvement shows. Methods of stitching up a wound are now so advanced that hopefully problems with scarring will decrease.

(Just a reminder that we have a talk on "Scar Management" at the Conference.)

Very many thanks to Angela for this information.

Case History

My name is Bipin Patel. I have two children, Anita and Raj. Anita is 23 and Raj is 17 years old. Both of them suffer from HME.

Anita was born a perfect baby - no complications at all, but as she grew up the first thing we noticed was that her right arm started to bow. Having known and heard about HME in our family, I got worried and so my doctor referred us to a Paediatric Consultant. There was nothing he could do to help us and eventually I was told that it was a genetic problem and we were referred to a Professor of Genetics. Anita was under his care for a few years and we were told that science had not progressed far enough at that stage to pin point the exact gene or genes responsible for the cause of HME. This was in 1982/3.

Because of the problems with Anita, we were reluctant to have another child. I went to see the Professor of Genetics who reassured me and said that a second child would not necessarily have HME - he said it was a two in one chance. We went ahead and Raj was born on 15 August 1984. He was a perfectly healthy baby at birth. As time went by Raj's forearms started to bow. He also started to develop bony lumps all over his body. He has had five operations to remove painful lumps and still has a few more to go.

Anita had a forearm straightening operation which was not successful. Both my children's legs are also slanted from the knee because of the bony lumps on the inside of the knee joint.

In my family, HME comes from my mother's side. I have traced it back to some seven generations. I have prepared a family tree of my mother's side.

Copies of Bipin's family tree are available directly from him. His email address is bipin180@aol.com and his postal address is 180 Cotmanhay Road, Cotmanhay, Ilkeston, Derbyshire, DE7 8QT.

Moving House?

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

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