- Congenital Adrenal Hyperplasia (CAH)
- Interviews
Sarah L's interview
How did all start?
It all started when I was born and started to lose weight and go drowsy and floppy, wouldn't feed and turned very grey coloured. My Mum was poorly as she had a bad time giving birth so my dad and grandma asked for a second opinion. This was the sixties in a small town hospital and not many people had heard of the condition. They sent an ambulance and team from the children's hospital in the big city and I was taken at five days old and revived with two hours of life left in me.
Do you already have a diagnosis? How long did it take you to get it?
I was diagnosed at five days old and I should imagine it only took a few hours if that.
For what medical specialties have you been treated? What has been the most useful specialty for your?
I've been treated all my life for Congenital Adrenal Hyperplasia. I've never thought of it as a speciality! I suppose what is more useful is the tests they did to me have saved a lot of lives when applied to other new borns.
What has been the most useful thing for you so far?
Hydrocortisone, fludrocortisone acetate and a loyal, loving mum who listened to the doctors.
What have been your biggest difficulties?
My biggest difficulties are hiding the condition from others and keeping well for as long as I can.
How has your social and family environment reacted? Have your social or family relationships changed?
I'm the oldest and the only one with the condition in a healthy family. No one apart from my mum who is the only one left who saw me growing up, understands, although some of the others attempt to without much success. .
What things have you stopped doing?
I haven't stopped doing anything apart from maybe trying to find romance, because all the things I wasn't allowed to do I've grown out of wanting to do before I could remember wanting to do them.
What do you think about the future?
I'd like the medical team to find a cure and try it out on me. I'd like to be healthy without relying on artificial hormones to keep me alive.
So far, which years have been the best years in your life? What have you done during them?
So far the best years of my life have been from approximately 1989-1995 when I was hardly affected by the condition at all. Then from 2010-2012. I wrote and went out and had romance and felt almost normal.
What would you like to do if you didn’t have your condition?
If I didn't have the condition I would like to travel, move from place to place and when I got fed up move on. No ties, no families, no worries.
If you had to describe your life in a sentence, what would it be?
A constant feeling unfulfilled and irritation unable to fit in but never lonely.
Finally, what advice would you give to a person in a similar situation?
What they will do and are doing to you is horrible and [painful and intrusive and you never learn to live with it or put up with it but there will be people alive today because of the application of tests results they did on you.
