Mum hopes to find cure for rare skin condition
8:30am Thursday 19th September 2013 in NW
A MUM who suffers from a rare skin condition with her two-year-daughter is hoping to turn the support group she set up into a charity.
Melanie Bradley and her daughter Rebecca suffer from Bullous Ichthyosis, a genetic skin disease which means they are missing a protein and their skin, which grows at an abnormal rate, is unable to regulate body temperature or maintain moisture.
She wants to create a charity to raise awareness and fund research into a cure for the condition, which occurs in around one in 100,000 births.
Melanie, aged 35, of Buttercup Close, Atherton, said: “It can be very painful, especially if the skin dries out and is torn, it will be red raw underneath.
“The skin is prone to blistering too and can build up on joints because we produce more cells than normal skin.”
Rebecca and Melanie have to bath regularly and apply several creams morning and night to prevent their skin drying out and cracking.
She said: “Rebecca doesn’t really understand but she has an idea. She comes and tells me now when she has a sore bit and that is normally when the skin has blistered. If that happens we have to pop it with a sterilised needle and dress it. We have to be really careful because the skin can get infected easily.
“We are lucky though, Rebecca can live a normal life, I would never stop her doing anything although we do have to be more careful when she is playing because the slightest knock and her skin will come off.”
Melanie helps as many people as she can from all over the world by offering advice and support about her experiences with the condition.
She said: “I just want to help as many people as I can because having someone to talk to who has been through something similar can be a great relief.
“It is a condition that doesn’t just affect the people who have it but the whole family and we want to support them too and share our experience.”
To find out more visit www.facebook.com/FriendsOfIchthyosis.
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