Sheenagh Kerwick talks about living with scleroderma, a condition in which skin and other organs harden
LIFE WITH scleroderma started for me at the young age of six. Now, at 17 years of age and doing my Leaving Certificate exams this month, I still find it hard to cope with.
When I was first diagnosed, scleroderma wasn’t even a known word or even a known disease for that matter. My diagnosis was for linear scleroderma morphea – but being at such a young age I didn’t know the difference. I just didn’t understand what was happening to me.
For the first four years of it, I was very very sick and missed a lot of school. As years passed, I still asked the same question the whole time in my head, “Why me?”
I used to get very depressed, just hating the way I looked and the way I felt – like I was different from other people.
I was prescribed medication, but I used to hate feeling I had to take tablets, knowing that I wasn’t going to get any better. Sometimes the pain would be so unbearable – the feeling of your skin getting tighter, and not being able to do anything about it.
To make it worse, no one really knows what it feels like when they haven’t had the condition.
The whole upper left side of my body became crippled after a few years, and the colour of my skin started to change. It became a lot stiffer, and my scars became a lot more noticeable. I just thought this would never end. It was all getting a bit too much for me.
For the past 11 years, I have been to more doctors than I care to mention. I’ve been fighting this condition so long. Trying to understand what is going on with it just scares me at times. I still don’t know whether treatments and tablets have slowed down my condition, or damaged me altogether.
But after many prayers, this rollercoaster started to slow down. I am turning 18, and I couldn’t feel any better. I feel so strong in myself, and a lot more independent in trying to do things for myself.
The hot weather we had a couple of weeks back is also something I have had to watch. My skin is so sensitive that it can’t take the sun.
The Irish Raynaud’s and Scleroderma Society has been great with support and information, and I’ve been to conferences.
I really want to help the society, and to help anyone who has this. I did a sponsored walk for the society at school, and even though I raised only €200 for it, they were all delighted!
I know that I wouldn’t be the same person without having this “lovely” condition. I suppose it has made me stronger. I also know that I would not have survived this battle without the love and support of my fantastic family, and the best of friends that I could ever ask for. These are the people who keep me strong and happy in life.
The one person who I give all my thanks to is my mother; with her gentle spirit and her loving heart. She always kept me protected when I was experiencing the worst of this condition.
To those who have been recently diagnosed with scleroderma, all I can say is that it is hard to cope with at times, and all you want to do is to give up on life. But don’t, because in the end, you will come out shining.
What is scleroderma?
SCLERODERMA is a rare, chronic auto-immune disease, characterised by a sclerosis or “hardening” in the skin or other organs.
There are two types – localised and systemic.
Systemic sclerosis can affect any part of the body, such as skin, blood vessels and internal organs.
The localised forms are morphea and linear, affecting mainly the skin and underlying tissues in some cases. These forms don’t affect internal organs, and are not life threatening.
Patients are treated to try to ease symptoms, as there is no cure.
About 90 per cent of people with scleroderma can also get Raynaud’s, which constricts blood vessels in fingers, ears, toes and nose.
There is still no full understanding as to the cause of the disease, which occurs worldwide, but women outnumber men by a ratio of four to one.
About one in a thousand people have been diagnosed with scleroderma in North America.
- For more information and support on scleroderma, contact the Irish Raynaud’s and Scleroderma Society, PO Box 2958, Foxrock, Dublin 18, tel: 01-202 0184 or 01-214 8950. Or you can e-mail: info@irishraynauds.com
