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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!
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.
I was diagnosed at birth with salt wasting CAH back in 1989 – when the condition was mostly understood, but not as much as it is these days. 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 some crazy (and pretty normal!) things in my time – bungee jumping, skiing, being a student just to name a few!
While getting up to such things, I’ve always remembered to take my tablets, been a little more vigilant to being poorly, and made sure that people around me knew about what could go wrong and what to do if it did. I say I, but obviously as a youngster that responsibility lay with my parents – who did (and still do!) a great job of keeping me on track.
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.
Newsletter and Content Editor
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!
Contact Jo & Mark
Jo & Mark
Area coordinators – Ireland
We are parents of two daughters who have CAH. Our introduction to CAH was when our eldest went into an adrenal crisis at two weeks old, as the CAH diagnosis was missed. The only thing we remember of that horrible night was being told that her condition was treatable and that she wasn’t going to die. We envisaged that her childhood would be spent in hospital, but that has not been the case. Both girls are healthy, lively and sporty and enjoy life to the full, despite some medical issues along the way.
After diagnosis we were keen to meet up with other families and so started yearly BBQs in our home. More recently, we have moved these events to a community centre near the north/south border. We are a small group but this has been a great support for our girls to meet other children like them and also to us as parents to be able to have open conversations with others who understand.
Neither of our children have had infant surgery and we advocate for more support for parents and children to make fully informed choices and to have the support needed so that we can raise our children to be adults who are happy and confident and not defined by their condition.