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 15, an operation on my wrists and feet in my twenties and removal of a bump on my right leg in my thirties. That's 15 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 16 and some of my brothers and sisters and their children are also affected.

My operation age 21 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

Frances Hamilton

Here is a recent photo of Frances.

Case History

I have had Diaphyseal Aclasis (HME) for nearly 40 years. I was what the doctors laughingly call a “mutation” – no family history at all. My father was the youngest of 12 and they were all asked. He found it very hard to accept that I had anything wrong with me. I found school very difficult either through name calling due to various deformities or because I was forced to do PE and couldn’t keep up with the other kids, then suffered with pain afterwards.

These experiences have helped me to understand how my children feel. My eldest son, Jon aged 17 years, was diagnosed at nine months after lumps appeared on his ribs. My daughter, Stacey aged 13 years, is not affected. My next son, Lewis aged two, was diagnosed with HME at six months. Classic, I think, exostoses being clearly visible on his ribs first and then his hands.

It is only now in recent years that I realise that a lot of things I couldn’t do or deformities I had, were typical of Diaphyseal Aclasis. When I was a child very little was known, there certainly seems to be more information out there due to the Net etc. It has taken me many years to realise that the pain is par for the course, and that for the course, and that I have to accept I am different. It doesn’t stop me though, I garden, dance, cross-stitch and have always worked full-time as a Nurse. I was in Orthopaedics for 15 years and the whole time I worked there, I never nursed a patient with Diaphyseal Aclasis at all! This made me realise how rare it really was and that we are special. Hopefully with research and new techniques, improvements will be made in how it is managed, operations to remove them with no real reason other than the fact that they are visible is a thing of the past. For instance my eldest son a few years ago, had coral instead of a bone graft inserted around his humerus, after the exostosis had damaged it and caused it to break on removal.

I find it very reassuring to know that there are other people out there with this and that no one is alone. I would be interested to know if there are many people in this area (Newcastle-upon-Tyne) with Diaphyseal Aclasis. I really do think that if you have a medical problem it makes the personality stronger to cope with anything the world throws at you.

My email address is karendensley@aol.com

Karen Densley

New scheme for giving to charity through the tax return

From April 2004 Self Assessment taxpayers (i.e. those who complete an annual tax return) will be able to nominate a charity to receive all or part of any tax repayments due to them. The Inland Revenue claims that they repaid £3 billion to nearly 3 million Self Assessment taxpayers last year! Using the tax return, a charity code number entered in a specific repayment box, will ensure that the repayment will be sent to the participating charity. The HME support group has registered as a participating charity and we will inform you of our code number as soon as it is received from Inland Revenue. The donation will be paid directly to the charity’s bank account and the form will incorporate a Gift Aid declaration meaning that the group will receive the relevant Gift Aid tax without having to make a claim. Look out for the code number in our next newsletter!

Steve Harding

Fund Raising

A big thank you for all the following donations which have been received in the last six months.

Aseriti	£98.29
This money was raised at a dress down/fun day held at the Aseriti Offices in Birmingham. Many thanks to everyone involved and particularly to the person who put our charity forward to receive these funds.
Pat Savage	£200.00
Pat raised this incredible sum at her birthday party. Much appreciation and thanks to Pat and all her friends and family.
Sheila Parkes	£50.00
Sheila held a coffee morning to raise this money for us. Many thanks to Sheila and all who took part and supported the event. We do appreciate it!
Mr and Mrs J E Gibbs	£69.00
Barbara and John donated the above amount, having recently come into contact with HME for the first time. Thank you so much.

Voluntary Subs...

Although we had a good response in the way of Voluntary Subscriptions from members last year, sadly this year has been very poor so far. We have only received 14 contributions and as we have a membership of 200+ families, we are obviously a little disappointed. It is voluntary of course, but at only £5.00 we hope that some more of you will be able to contribute before the end of the year.

Monies received help with the day-to-day running of the Group and especially the cost of supporting members. They also go towards the cost of the newsletter production and postage. In the long-term of course we also need funds to help finance the conferences and meetings we hold and also for the upkeep of the website.

Please help if you can (click here). Thank you.

Kids' Bit

What's happening to our Kids' Bit? People keep telling me "Oh yes my child has a lovely piece for the newsletter", or "My kiddie has a great joke for the Kids' Bit". Oh dear, so where are they?

I can only print what you send me, unfortunately there is no point in making it up, so please, please, please send me anything, something, small, large, jokes, wordsearch.

Wordsearch.... now there's something, just to get you started I have made my own wordsearch especially for all those children out there.

Once I had a title (with the help of Josh my son) it only took me about 30 minutes to do. Please let me know how you found it and if it was any good. Next time it is up to you. Here is the list of words, and they can be up, down, forwards, backwards and diagonally. Good Luck!

Skateboarding Potshove Kickflip Vans Hawk Quicksilver Hockups Etnies Flip Animal

In the nick of time I was sent some jokes by Catherine Small:

Knock Knock
Who's there?
Midas
Midas who?
Midas well open the door and find out!

Knock Knock
Who's there?
Luke
Luke who?
Luke through the keyhole and find out!

Knock Knock
Who's there?
Justin
Justin who?
Justin time for the party!

Q: What do you call the leader of the hankies?
A: The Hanky Chief!

Q: What do you call a woman with half a lizard on her head?
A: Liz

Here is a poem from Ceitidh Anderson aged 7 years from the Isle of Arran in Scotland.

My bones are bumpy
My bones are lumpy
HME makes me grumpy

Would any one like to be my pen friend? Love Ceitidh

...if you would like to write to Ceitidh, please send your details to the HMESG and we will be delighted to pass them on...

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