It can easily seem that Support Groups such as ours are face-less entities. Many of our members will have met us at past conferences and meetings, but some will only know us through letters, emails and phone conversations.

Here's your chance to find out a little bit more of what we do and, of course, what we look like.

Sue Elford
Chairman
sue@cah.org.uk

I remember quite vividly the day I first heard the words 'Congenital Adrenal Hyperplasia' and the devastation I felt when told that this was an incurable condition. The 'good news' was that it was treatable but I found that hard to appreciate at the time and could only acknowledge the fact that my two-week-old son faced a lifetime of daily medication and I naturally feared for his future.

Alex is now 19 years old and although we have had a few ups and downs along the way (including poor feeding, weight gain, headaches and slow growth), we managed to resolve these problems with the help of an excellent paediatric endocrinologist. Alex managed to have a pretty normal childhood and had no problem participating in the same activities as his peers (he played football and tennis for a local team/club, went on school trips/ camping with the cubs etc) and I cannot say that CAH has really held him back in any way.

Despite poor growth throughout childhood, where he remained the smallest child in his class for most of his school days, Alex now stands at the same height as his father (5ft 9") and is of slim build and extremely fit and healthy. Having done well in both his GCSE's and A levels he could have gone to University but decided it wasn't for him and now has a good job working for a well known hotel chain. He owns his own car, which he has extensively modified (so a good salary is a necessity to pay the extortionate insurance premiums!) and like his many friends is always out and about, enjoying life to the full. If only I could have looked into a crystal ball years ago, I would have trusted the 'good news' and appreciated the fact that with adequate medical attention and treatment, patients with CAH really can lead 'normal' lives!

In 1991, when Alex was three years old, his consultant asked me whether I would help him organise a conference for parents of children with CAH. After initial hesitation, I agreed and this was held at the Institute of Child Health in London. This was the start of the CAH support group and we have held many more successful conferences since then. As well as learning from the expert speakers, we find that parents really appreciate meeting other families, who share their worries and concerns and above all are able to provide the reassurance they require. I personally have learnt a great deal over the years and have made numerous new friends as a consequence of this extraordinary condition!

Sallyann Blackett
Newsletter Editor & Information Officer
sallyann@cah.org.uk

Gavin and I became involved with CAH when we had our first baby. Christopher was 10 days old when he was admitted to hospital and we were very lucky that the consultant on call recognised what he may have and began treatment. I remember the stress and bewilderment at first realising how close we were to losing our baby, and then having to come to terms with a condition that would need lifelong treatment.

Christopher is now starting school. He is on a par with his classmates height wise and is very bright and keen to learn. He takes his tablets without any problems and is just starting to learn why. When I became pregnant a second time I took the pre-natal treatment and the CVS test in case our second child also had CAH Ð she doesn't but we would have managed even if she had. CAH is not the end of the world; Christopher is just like any other child.

We were unsure whether to join the support group or not at first, I didn't want to have to think too much about CAH. However, we went to an AGM, offered to help and have been involved ever since. I am grateful for all the help and support we have been given. The information the support group provides us has helped immensely over the past few years and I am looking forward to being able to share this information as widely as possible so that everyone can benefit.

Gavin Blackett
Treasurer & Membership database administrator
gavin@cah.org.uk

Well, having read that passage (or hopefully at least skimmed through it!!), you already know about my link with CAH, so I thought I'd write about what I do in terms of committee work and then something about what I like to do away from the committee.

My main role is obviously as the Group treasurer and as such involves taking care of all the monies from subscriptions, donations and other fund-raising activities. This means that at the same time as thanking you politely for your donations, I'll be demanding money in terms of subscriptions renewals. So far everything has been going well and I haven't yet had to resort to 'sending the boys round'. Once a year, in time for the AGM, I'm responsible for making the books balance and telling everyone what we've spent, what we've received and how much we've got squirrelled away.

Clearly, the treasurers job is closely linked to membership and so I'm the obvious candidate to deal with the membership database. This is also helped by the fact that I build databases and mathematical models for a living - I'm an Operational Research consultant.

Away from work I enjoy playing competitive badminton, listening to music and watching ice hockey. The whole family are season ticket holders at the Nottingham Panthers. Christopher and I are both learning to skate. This is a little disheartening at times when your four-year-old son is already better than you!!