But remember this is your Newsletter and we need your input and ideas to make it a success so please, please send us any comments, ideas or articles you would like to see included in the future. You can contact us on w.tollman@btinternet.com or brg5@ontel.com.

AGM and Members Forum 2005

The Theatre at Headington was a particularly impressive venue to host our 2005 AGM and Members Forum. Situated in the equally impressive grounds of Headington School, we not only enjoyed up-to-the-minute conference facilities in a comfortable theatre but also space to accommodate a crèche/workshop, youth session and dining facilities.

The Evaluation Forms (completed at the end of the day) and comments received on the day and immediately after confirm the Forum was a success with all who attended enjoying themselves and gaining so much from the experience. Most felt the content of the meeting met their expectations and that the topics covered by the speakers were very useful.

70 adult members attended, 14 teenagers attended the youth session and 18 children attended the crèche/workshop. It was a pleasure to welcome our two special guests, Jan de Lange and Marion Post, from the Netherlands. Thank you to you both for making the journey.

Bianca Todd has written an article on the Youth Session. It was a delight at the end of the day to see the smiles and oozing enthusiasm on the faces of all whom attended this session. This was the first time we had organised a session for just this age group, however, I am confident it will now be a permanent fixture. Thank you Bianca for all your hard work. Bianca has some great plans and ideas to help our younger members, and develop their understanding. No doubt these plans will be met with similar enthusiasm.

Our youngest members enjoyed the surrounds of a fun crèche/workshop. Once again the crèche team employed provided a professional service. A number of the children were able to get out into the grounds of the school and enjoy the school playground in the pleasant spring weather. The highlight to the afternoon, however, has to be the magician who delighted the children with his trickery and talent. A fun time was had by all!

Dr M Issac, Consultant Physician and Senior Lecturer in Psychological Medicine at the University Hospital Lewisham, London opened our speaker programme. His talk on the psychological effects of a condition like HME placed particular emphasis on the importance of a good diet to help manage mood and pain. Following Dr Issac, we introduced a new session to our meetings, Members Stories. The idea was for a couple of members to share their experiences with the audience, leading to constructive discussion amongst members. Helen Beeston and later in our second Members Stories session, Carolanne Anderson gave excellent talks on how HME has effected them and their families. Carmel Shane also recounted her experiences. Plenty of discussion surrounded each of the members’ stories and huge admiration was expressed to them.

It was unfortunate that Dr. T Cole was unable to speak at the last minute owing to an unavoidable family commitment. It was a blessing, however, that Mr Daniel Porter (Senior Lecturer and Honorary Consultant Orthopaedic Surgeon, New Royal Infirmary, Edinburgh) was able to step in. Having already presented to the Youth Session, and despite a tight travelling schedule, Daniel provided a very useful breakdown of the genetics of HME, and then went on to answer many questions from the audience on genetics and HME concerns in general. It seems the normal pattern now that at some stage of the meeting a revelation is made relating to HME. This year was no exception, with it becoming apparent that lumps around the spine are not so unusual.

AGM matters all conducted and with the usual buzz of excitement remaining in the auditorium the forum came to a close. New and old members then enjoyed a splendid buffet, further chatter and discussion with many of us not wanting the evening to end at 8.00pm.

Thank you to the committee members (new and old) for their unending support. Particular thanks to Dawn for all her efforts raising funds and Helen for arranging the speakers. Also thank you to the committee’s partners without whose support the day would not run so smoothly. There is now a body of dedicated members who without fail attend our AGM and meeting and offer their assistance on the day. Alison and John Simpson, Glyn Tams and Lynda Grisenthwaite, Debbie and Michael Errington, Heather Emerson, and Carolanne Anderson, your support is always appreciated. I do hope I have not left anyone off this list, please accept my apologies. Thank you also, to new members Christine and Tony Spencer for your support.

Finally, the AGM and forum would not succeed without the effort members make to attend. So my final thanks are to you for your continued support.

As you will see from elsewhere in the newsletter next year’s plans are underway. I look forward to seeing you all again then.

Sarah Nicholls
Conference Organiser

Youth Session

For the first time it was decided that the young people whose lives are affected by HME should have a dedicated session that met their needs. So whilst the older members were in the hall, and the younger children in the crèche, the youth session for young people aged 13 years plus got going.

• Learning about HME
• Raising confidence and self esteem
• Mutual support and having fun

Since the meeting, the young people have kept in touch via email, and the group has even expanded to include a new young person. Questionnaires have been sent out via email, and now the task is on to contact other young people who were unable to attend the conference, so that we can ensure that we are meeting all the young people’s needs.

Anybody who is interested in being a part of the youth section or has any questions or suggestions, please contact Bianca: c_hatltd@yahoo.co.uk.

Bianca Todd
Vice Chair

Let’s help each other...

I am sure that we all have our own ‘little tricks’ to try and help relieve the discomfort and pain of HME for either our loved ones or ourselves. Since our coping strategies are probably all different, though, we thought it would be nice to provide an opportunity to share them – after all, if it works for you it may just work for someone else too! So please send us in any tips you may have.

To get the ball rolling, here are a few things I do for George (my son, aged 5) which may help other parents of young sufferers...

Wheat bags – heated in the microwave for up to two minutes, these provide warmth and comfort on troublesome leg and arm bumps enabling George to get to sleep more easily. They come in a multitude of shapes – his is a lovely teddy bear and smells of soothing Lavender – and are more cuddly than a hot water bottle and ‘mould’ round bumps easier. They are readily available in shops or over the internet.

Turning – I couldn’t work out why George ached more after a good night’s sleep than after a more restless, disturbed sleep – surely 13 hours uninterrupted slumber should revive anyone! At one of our routine visits, however, my doctor suggested it may be because George was resting on certain pressure points too long which made him stiff the next morning. The answer – if George is ‘dead to the world’ I set my alarm for the middle of the night and ‘turn’ him to relieve any pressure points. It may be an inconvenience for me but it does seem to make a difference to him!

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