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 about us and what we do in the support group.
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 25 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 found a position in an accounts department locally. He is now AAT qualified, having taken the exams at night school and has progressed well and most importantly (to him) earns a decent salary! This has enabled him to buy his own house and he lives in a village not too far away with his fiancée. His wedding is booked for next year (August 2014), which is an event we are all looking forward to! All in all, he has had a very happy and successful life so far and there is no reason why that shouldn’t continue! 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!
I became involved with CAH when I had my 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.
Chris is now starting GCSE. 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 although he is very forgetful and has to be constantly reminded!
We had a bit of a scare when Chris’ bone age jumped from 6½ at age 6 to 11 at age 7, four years gone just like that! He had an LHRH test to see if he had gone into early puberty and we increased his dose in an effort to get control back. Over the next few years the bone age held steady and gradually his calendar age has caught up with his bone age – we were lucky I guess. He is now a good height and still growing with about 6 months of puberty left. He manages the regular checkups and embarrassing measurements without too much complaint. At 15 he is just starting to ask questions about the condition and what it means.
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 – she doesn’t but we would have managed even if she had. CAH is not the end of the world; Chris 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.
I have been to a few conferences now and have learnt something new at each one. The information the support group provides has helped me 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.
The main reason I wanted to be involved in the support group was to show that you can have CAH and lead a relatively normal life. I was diagnosed at birth with salt wasting CAH back in 1989 and I'm happy to answer questions on anything to do with CAH - if I can help someone out or provide reassurance then that's great.
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 and will continue to do so I'm sure. I've been on holiday to all sorts of places, I've eaten weird and wonderful foods, I've been horrendously drunk and suffered hangovers and I've had colds and various other ailments.
Despite these happenings though, 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, but with more mundane things like reminding me to tax my car) a great job of keeping me on track.
Although my main role now is as secretary, my involvement in the committee all started when I approached Sue to organise a meeting in the Midlands. After the first one went extremely well, I was given the role of Area Contact Coordinator. This involved looking after all our area contacts and helping them to organise regional meetings too, which I can still do! I'm the area contact for the Midlands, but that doesn't mean I won't talk to any none-midlands people - I'll talk to anyone...!
As I said, if you want to ask anything, then go ahead and drop me an email. Or perhaps you want to be an area contact, or you have an idea for a regional meeting. Having a support group available has been great for me over the years, and hopefully I will be able to offer any help, reassurance or ideas about dealing with this unusual but by no means life limiting condition.
I was, as are most other parents with children who have CAH, totally overwhelmed and upset at the time; by the initial diagnosis. To handle and care for a new-born baby is hard enough, particularly the first born, without the additional worry of a life-threatening condition and the necessary administration of medication. It makes for a scary time.
Sue Elford was there for me in 1991 with handwritten letters (no e-mails in those bygone days!) and pics of her son Alex who was doing well. I will never forget her kindness and support. The amazing thing is that she has continued to give this support to most others at this critical time too. I truly believe she has a bit of the ‘Mother Theresa’ in her!
My son is working 15hr days in very hot and stressful conditions, as a chef. The CAH has never curtailed what he wants to do in life or his truly rebellious spirit!
As Information Officer I hope to be able to contribute with my knowledge of raising a child with this manageable but sometimes individual and complex condition. Specifically I would like to support those with boys who are going through the puberty stage ….this can be difficult as most of us know and most usually this has nothing to do with CAH!
In 2011 our daughter Freya was diagnosed with salt wasting CAH at the age of 4. Unlike many parents we were relieved to discover that Freya had a condition that could be treated as opposed to the big “C”. It also answered many hospital visits that were left inconclusive and the jigsaw all started to fit.
Freya is full of life and at the tender age of 6 takes everything in her stride, including her tablets 4 times a day and hospital visits. We are learning as we go and that’s the whole family, a few traumas’ along the way and many questions from all angles i.e. her siblings, family members and friends – but so far so good!
After attending the Conference in Bristol and getting so much from it, I was very keen to become involved in the Committee in some way, especially after discovering how few members there are!
A fantastic support group, so hopefully I can give something back by producing the Newsletter on a regular basis.
Our introduction to CAH was 11 years ago when our 2 week old daughter went into an adrenal crisis. The only thing we remember being told that horrible night was that her condition was treatable, she wasn’t going to die. She was however at risk of having seizures. We envisaged that her childhood would be spent in hospital, but that certainly has not been the case. She is now a very healthy, lively and sporty girl who enjoys life to the full. She now has 2 sisters to share the fun, one of which also has CAH. We have had a few medical issues along the way but they take them all in their stride.
After diagnosis we were keen to meet with other families and so joined the support group. Our consultant also put us in touch with a few local families and we started yearly BBQ’s in our home. In recent years we have opened this up to families in all of Ireland and meet once or twice a year in a local soft play area, near the north south border. Our children love to meet up and the parents share stories, support new families and love the openness of talking about all aspects of CAH with other parents who understand. As well as being parents, we have had to be active advocates for our children and lobby the Health Board to continue to fund an endocrine consultant in Northern Ireland. As neither of our girls has had surgery we have also had to learn how to explain this to our daughters and to try and raise them to be happy and confident young ladies.
Hello. I have recently joined the committee as 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 well and happy, living a full and active life, whilst managing a long-term disability.
Over the last few years it has been lovely to be in-touch with and meet many adults with CAH and share experiences and strategies about health, work, doctors, fertility, family and of course being on life-long corticoid treatments. It is a fact that many adults with CAH feel very isolated and have a lot of complex feelings about their condition and struggle to get support and find someone to talk to. Please feel free to get in touch via my email and will do my best to help.