Meet the team

It can easily seem that Support Groups such as ours are faceless 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 about us and what we do in the support group.

The committee

If you want to contact a specific members of the committee, you can do so here. However, if your query is more general please visit the Contact page.

Contact Sue

Sue

Chairman

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.

Wind forward 30 years; Alex is now happily married with a family of his own. Although we have had a few ups and downs along the way (including poor feeding, weight gain, headaches and slow growth), he had a pretty normal childhood and having CAH has not really held him back. 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 good medical attention and treatment, patients with CAH really can lead ‘normal’ lives!

When Alex was three years old, I helped his consultant organise a conference in London for parents of children with CAH, and this was the start of the CAH support group. Since then we have held many more successful conferences, produced numerous leaflets/booklets and a regular newsletter, all of which we believe have helped provide families living with CAH with the knowledge and reassurance required to make life a bit easier. I personally have learnt a great deal over the years and have made numerous friends as a consequence of this extraordinary condition!

Contact Sallyann

Sallyann

Treasurer

Although by profession I am a senior manager in the energy industry I knew very little about medicine or biology. This all changed in 1998, when I had my first child. Chris was born with Congenital Adrenal Hyperplasia and almost died in an adrenal crisis at 10 days old. This was a sudden introduction to the endocrine system and all it’s complications. Having struggled to find information or get any help the first support group conference I attended 3 months later was such a relief. It provided help, information and the ability to talk to others in the same situation that I needed.

I have been involved with the support group ever since, becoming treasurer several years ago. I am a firm believer that the support group provides a much-needed help to new families and a patient voice advocating for those with the condition.

Contact Jess

Jess

Secretary

I was diagnosed at birth with salt wasting CAH in 1989. The condition was mostly understood then, but not as much as it is now. I’m involved in the support group because I want to show that you can have CAH and lead a ‘normal’ life.

I don’t see having CAH as a restriction, but you must be aware that it’s there. I’ve done all sorts of things, just as we all have – from skydiving to skiing, to going to university and doing a full time job.

Remembering tablets, being a little more vigilant to being poorly, and making sure that people around me know what to do if something goes wrong, seems to have got me through relatively unscathed so far (save a few broken bones and appendicitis).

Having a support group available has been great for me over the years, and hopefully I can offer help, reassurance or ideas to those living with this unusual but by no means life limiting condition.

Contact Chris

Chris

Newsletter and Content Editor

I was diagnosed at birth in 1998 with salt-wasting CAH, and am now here to help reassure, answer questions, and generally support others with CAH.

Having CAH has never held me back in my life, especially as my parents have never allowed it to. When I said I wanted to play ice hockey, they let me; when I said I wanted to play rugby, they let me; when I said I wanted to play field hockey, they let me. A lifetime outdoors with Scouts was also encouraged, including trips up various mountains in the UK and overseas as far as Japan.

I’m generally reasonably good with taking my tablets, although often had to have a reminder when I was younger. Being a student, I’ve been drunk enough for three, weathered many a hangover, caught any number of colds, and lived to tell the tale – and assure you your children will survive university with CAH.

Currently I am taking part in an exciting medical study run by Diurnal for a replacement hydrocortisone drug called Chronocort, which has helped lower my dose considerably and made it easier to manage with it being a twice-daily medication.

I’ve recently joined the committee as Newsletter Editor, and look forward to being more involved with everything the Support Group does.

Contact Kaz

Kaz

Adult Support Group Co-ordinator

I was born in 1963 with classic 21-hydroxylase salt wasting CAH. Life has had its ups and downs living with CAH but I am fortunate enough to be living a happy and fulfilling life whilst managing a long-term disability.

Over the last few years I have become more involved with the CAH support group and am currently one of the trustees now we are an independent charity. It has been lovely to be in-touch with and meet many adults with CAH and share experiences and strategies to help manage health, work, the Medical system, fertility, family, and education and of course being on life-long corticoid treatments. It is a fact that many adults with CAH often feel very isolated and have a lot of complex feelings about their condition and struggle to get support and find someone to talk to. With progress in understanding of CAH, improved treatments, and more support available to families, children and adults it is hoped that future experiences of adults will more positive.

Please feel free to get in touch!