Atherton mum is spreading the word on rare skin condition
6:10am Tuesday 4th February 2014 in North West
CHATTERING away as she plays with her toys, Rebecca Bradley is like any happy two-year-old.
She loves giggling, going to nursery and loves spending time with her big brother Daniel.
Yet little Rebecca was born with a painful skin genetic disease called Bullous Ichthyosis — the same disease her mother Melanie has lived with all her life.
The condition — which affects about in 100,000 children — means the mother and daughter’s skin thickens around their joints and breaks out into blisters.
Melanie, aged 36, says she has had to learn to accept herself “for who she is” but when Rebecca was born with the same condition, she was inspired to set up a support group called Friends of Ichthyosis.
So far, the group has attracted more than 600 people affected by the condition but Melanie wants to take the group further and fund research into a cure.
The mum-of-two, from Atherton, said: “When I was growing up, there was no support for my mum. Even people in the medical profession didn’t know very much about it. She tried to set up a support group but no-one was interested at the time.
“I didn’t meet anyone else with the condition until 1998 and when I did it was amazing. I didn’t know there other adults and children out the same skin condition with me.
“Now I have Rebecca I want to raise as much awareness as possible and I am hoping the group will gain charitable status. It’s going to take a lot of hard work but I’m determined to get to that level.”
Melanie says one of the worst things about the condition is being judged by people who do not understand it.
She added: “When you have something visibly wrong with you, it’s common for people assume that you haven’t washed properly.
“We live in a cruel society and I have learnt that first-hand. Some of the comments people make can be really cruel. We have heard of families being accused of burning their child.
“That’s why I wanted to try and get a community group together to help people living with the same condition. There are a lot of people out there who are suffering in silence.
“I think the hardest thing when you’re living with a condition like this is learning to accept that you are different. I have always been lucky to have good friends from as far back as primary school.
“I just don’t want anyone to feel like they’re on their own. It’s not just the person living with the disease; it’s the whole family too.
“This is why I feel education is key. It’s not just among children and adults but medical professionals as well. Obviously I don’t expect a GP to know everything but I have had some bad experiences. They need to be aware of the condition and how they can help people too.”
The genetic fault means Melanie and Rebecca’s skin grows much faster giving it the built-up appearance and scaly texture.
They both have to follow a strict daily routine to prevent the skin getting infected. Yet the most debilitating effect is the pain caused by the blistering and cracking of the skin.
Even having a bath can be painful because their skin is not waterproof, which means it turns soft and peels off.
Melanie and her husband Vincent, aged 32, did not know Rebecca had the condition until she was born.
“I was upset at first but I have always said whatever happens you have just got to deal with things as and when they arrive,” added Melanie.
“There’s no point dwelling on something you cannot change.”
Tiny Rebecca had to be kept in intensive care for two weeks due to the fragility of her skin.
Her condition still causes her a lot of pain but nothing stops Rebecca from being a fun-loving toddler.
Melanie said: “Rebecca does struggle from time to time she is just so lovely and bubbly. She can be a little madam too and get quite bossy. But we’re so proud of her — she’s such a loving little girl.”
For more information about Friends of Ichthyosis go to: friends-of-ichthyosis.webs.com/
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