When my oldest daughter was born in 2000 all was wonderful, apart from a few rough patches on her skin. However, the following day her skin begin to blister and suddenly starting shedding all over and would not stop – nearly all of her skin from the neck down came off and she was left red all over.
It was an extremely frightening and very difficult time for my wife and I, as we were rushed down to Special Baby Care.
We were transferred to Great Ormond Street Hospital whereby it was confirmed that our baby girl had Bullous Ichthyosis (BIE)
The Ichthyosis Support Group (ISG) contact, Pamelia was on hand to assist and was invaluable with information and practical advice – my wife and I really appreciated this support in what was a crazy first few months of our little girls life.
We soon got into the daily routines of bathing, creaming, special shampoo’s etc and my daughter grew fast and developed well.
In 2002 I managed to run the London Marathon for the ISG as a gesture of my appreciation for their invaluable support. This led to me meeting the trustees and shortly being invited to become a trustee myself.
My daughter is 12 years old now and still has a daily skin care routine that sometimes drives her mad, but she is active and healthy and lives life to the full.
As a voluntary trustee I have met some really wonderful people with real challenges in their life and I am always amazed at the positive impact our conferences have on families when they meet fellow sufferers – in particular when children meet other children with the condition for the first time and realise that they are not alone.
Our group does not receive any funding but purely survives on kind donations – we have a part time administrator but otherwise everyone else is a volunteer so if you can help please get in touch – these conferences and family days all cost time and money!