The AGM is open to all members to attend. Numbers for the Members’ Forum will be limited, however, all members will have the opportunity to apply for tickets. Full details will be forwarded once the programme is confirmed.

The venue will be The Theatre at Headington, Headington School, Oxford. Helen and myself are working on an exciting programme for the afternoon, with a slightly different format to previous meetings planned. As before the afternoon will start around 2.00pm, concluding with a buffet tea and informal evening. A crèche facility will be provided for our younger members and we are also planning a special programme for our teenage members.

For members wishing to stay Friday and/or Saturday night, a local hotel will be recommended.

I look forward to being in touch again shortly.

Best wishes
Sarah Nicholls
Conference Organiser

Did you know?

That the HMESG is a member of the Genetic Interest Group (GIG)? For more information see www.gig.org.uk.

HME Conference in Holland 5th June 2004

A Teenager's View
In June I went to Holland with my mum Dawn Searle (the fundraiser of the group) and Helen Small (the chairperson). We went to the HME meeting in Amsterdam and I was really pleased and excited as I met some new friends there and it was really good to get another country's point of view on HME.

The Dutch had set up lots of workshops for the adults and children to attend throughout the day and they varied from tai chi to swimming and sports classes. The sports classes were lots of different sports and the man that taught us was a really nice guy. We first started with stretches and exercises to warm up and if any of us were in pain we just said and we were allowed to sit out. We played hockey and basketball which was really good as we all joined in and played matches against each other. The other activity we did was swimming in the afternoon, which was good as well. In swimming we did exercises in the water (hydrotherapy) and played games like throwing sponges in a bucket across one end of the swimming pool to the other. We had a lady called Annette who told us what to do in the pool. She was very helpful. After we finished the workshops, we all met in the main hall for a drink. We heard a man speak and then we all talked to other people for a while.

I am still in contact with my new friends from Holland and I talk to them on MSN Messenger (a free chat program). It was really great to go to Holland and I would most definitely go back there to their conference again if I had the opportunity. It was really good to see what they thought about HME. They were lovely people and as I had never been to Holland and always wanted to go, it was a special trip. I saw a lot of sites during the short day trip we had there including the Ajax stadium and lots and lots of windmills. In all, the day was a really good day and even though my legs were really hurting I thoroughly enjoyed it. If anybody would like to contact me, my email address is searley_69@hotmail.com. I am looking forward to hearing from some of you.

Thanks
Rob Searle

P.S. Please can you kids send some stuff for the kids' page? We have to show the grown ups we need a page too. You can write a letter or draw - tell us a joke if you like.

An Adult's View
I arrived in Schipol Airport, Amsterdam, with Dawn and her son Robert early on Saturday morning. We were met by Jeffrey, an active member of the Netherlands HME Support Group, who drove us to the Special Needs School in Utrecht where their Annual Meeting was being held. During the 40 minute drive, he told us that the Group has around 150 members and that there are around 400 people with the condition in The Netherlands.

The day started with refreshments and cake. We were met by Marion who set up the Group seven years ago, Jan who is the Chair and Ghislane and Artur who were helping to run the day, spoke very good English and were to be our translators. All the refreshments were organised by a team of volunteers, using the school kitchen and serving area.

The main hall was set up with audiovisual equipment and lecture theatre style seating. Jan opened the meeting with a welcome, which was followed by a talk from an Orthopaedic Surgeon, Dr Ham. It was reassuring to discover that the information being given to the Dutch members is similar to that being given to our British Group, giving a feeling of stability and confidence.

Having previously chosen which workshops they would like to attend, the members then divided up into groups and went to classrooms for their first workshop. The workshops included general swimming, hockey for the children (to encourage them that activity is good especially for quick recovery from surgery), Tai Chi for the adults, physiotherapy, pathology, a children’s workshop with an orthopaedic surgeon and a counsellor and the same for parents separately. I think there was also someone around to advise on special equipment at school and possibly occupational therapy matters.

Lunch consisted of rolls, yoghurt, fresh fruit, buns, tea and coffee and cold drinks. After lunch there were more workshops, finishing up with refreshments, cake and chocolates. Then everyone took their seats again for the summing up of the day, which consisted of reports from the workshop leaders.

Dawn and I spent our time being shown around the workshops and chatting with the committee. We discovered that our two groups were quite similar and that there was much common ground. We also took part in a Tai Chi session which was most interesting, although difficult for us to understand due to the language.

We also spoke to the Orthopaedic Surgeon, Dr. Ham, and to a Belgian Geneticist who is working on rare disorders, including HME. At present he is investigating the third EXT gene that may be involved as well as EXT1 and 2.

It was interesting to experience a different sort of meeting. Although similar to ours in many ways, we were able to think about how we could incorporate some new ideas such as workshops into our next Conference.

All in all, a very enjoyable and interesting day.

Helen Small

To see photos of our visit please go to www.hmesg.co.uk/utrecht/

HMESG trolley coin key rings

Key ring sales
This autumn my mum came back from one of her HME Meetings and she had to try and sell 200 key rings. These were not normal key rings. They were in fact substitutes for £1 coins which can be used for things like trolleys or swimming lockers etc. and as they live on your key ring, they are always there for you when you need them.

Then I had the idea of selling them at my school (Cokethorpe) and I am really pleased to report that so far I have sold about 30 and they are still selling! People have been finding them really useful and I am selling them to people of all ages, from teachers to very young pupils. Sales have slowed down, but they are still selling! We are now looking for new ways to sell the next great idea.

Peter Small
(with thanks to Cokethorpe School, Witney, Oxon)

Well done Peter - THANK YOU!

and more...

A big THANK YOU also to Jane Howard and her son Ross who have been busy selling key rings on our behalf too. At the time of going to print they have sold a staggering 340! Thank you to everyone involved, especially those at Chelsea, Fulham, Notting Hill and Kensington Police Stations and those at St Etheldredas with St Clements.

Noticeboard...

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

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

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

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

Sponsored Walk

Total amount raised: £1,290.60

Can I thank all of you for your support. The day was such great fun and what a lot of money raised. Well done everyone.

A big thank you to Keith, a very good friend, my nieces Gemma, and Natalie, my nephew Reece, my mum Pat and my dad Joe for doing the walk with me and raising their money. We walked 15 miles in all, across far too many bridges and I am sure we went over one bridge more than once!

It took us 3 hours 45 minutes, this was because we were explaining to everyone what HME was as we went along and also collected extra money. We had many sponsors, those who gave us individual sponsorship and those who rallied round and got lists of sponsors – thank you to everyone. We really appreciate all your donations.

Dawn Searle

The Committee

In the last couple of newsletters we have tried to give you an insight into one of the committee’s life. This newsletter we are getting to know Pat Savage a little better. Pat is the National Contact for the South.

Hello Everyone!

My name is Pat Savage, I can trace my HME pedigree back for three generations on my mother’s side.

The present generation of HME sufferers are fortunate. When my daughters were growing up, home computers were in their infancy and of course the Support Group did not exist. There was no web site – we felt we could be the only ones with the condition. We all know now, that although rare, it has a world wide distribution.

Thanks to the inspiration and energy of Helen, our Chairperson, we have Newsletters, Conferences and the chance to meet other people and forge friendships, with HME as the common link.

A particular interest of mine is the genetics of HME. Although for everyone it is a very personal decision, I am delighted that my daughter Gillian took the plunge and had her son James. He is now nearly two years of age and none of us could imagine life without him.

I have been very grateful to have been given the opportunity to serve on the HME committee with such dedicated people. I know that Helen would appreciate further help. They are all lovely people and a warm welcome would be extended to anyone wanting to volunteer their time.

Best wishes to all of you and hopefully we will see you in April.

Pat Savage

Situations Vacant

As Pat says, we are looking for help! If you would like to join us in working towards raising awareness of HME and the Group and offering support and information to those affected by the condition, we would love to hear from you. We are a friendly bunch and would really appreciate it if any members could take on the roles detailed below.

All expenses are reimbursed.

Vice-Chair
We are looking for someone to join our Chairperson and Committee to help in the running of the Group.

Newsletter Editor
As Debi steps down from this role, we are looking for a person or group of people, to take over the newsletter, which is produced twice a year.

Secretary
Sarah is concentrating on Conference organisation and we are therefore looking for a Volunteer to take on the secretarial work of the Group.

If you can help, we would be delighted to hear from you. Please email, write, or give us a call for an informal chat or to find out more. We look forward to hearing!!

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