A young mum-of-two suffering from a rare condition loses so much skin at times that she is forced to go around her home vacuuming it up.
Rebecca Sayers, from Kenley, south London, was diagnosed with psoriasis as a child after a patch appeared on her face but since then it has spread.
Now 21, and a single parent bringing up her daughters aged one and three, she is speaking out to raise more awareness about her condition.
The condition causes skin cells to multiply up to ten times faster than normal, which makes the skin build up into bumpy red patches covered with white scales.
It means at times Rebecca is in so much pain she can't sleep and is unable to do the most simple things such as going outdoors to enjoy the sun.
While she also also faces other issues if she stays indoor.
Rebecca told MyLondon : “My whole floor of my house gets covered with patches of my skin which fall off - every minute of every day, it’s all over my room, it’s all over the front room, it goes on the baby’s clothes.
“The amount of times I hoover a day just to get rid of the skin, it’s always constantly falling off my body.”
As a child Rebecca's skin condition made her a target for bullies at school who told her 'nobody will ever love you,’ ‘you’ll never find a partner,’ ‘your mum and dad hate you’, and ‘people wish that you were dead’.
She recalled: “People even said I look like KFC chicken."
Psoriasis, which is caused by Rebecca's immune system attacking itself, covers her body from head to toe.
Rebecca said: “There have been times when I’ve been crying because my skin is so itchy, and I’ll scratch it to the point where it’s weeping.
“For the last however many months it’s been I haven’t been able to sleep properly, I’ve been ripping my skin open in the night time scratching it.”
Throughout her teens Rebecca was prescribed steroid creams to try to control the itchy red patches, but they didn’t have much of an impact.
Psoriasis is exacerbated by which meant Rebecca was stuck in a vicious cycle where she would be so stressed by the bullying that her skin condition got exponentially worse.
She said she quickly reached the point where she had been prescribed so many different steroid creams that ‘they weren’t doing anything anymore.’
When Rebecca was 16 she was diagnosed with hidradenitis suppurativa (HS), another long-term skin condition which causes painful abscesses and scarring on the skin, particularly in sensitive areas.
The HS is another product of her weak immune system, and Rebecca said hers was diagnosed after her mum spotted someone with the same thing on embarrassing bodies.
Around that time she was referred to a dermatologist, who agreed she should have phototherapy, as the steroid cream wasn’t doing enough for the psoriasis.
But she was also on strong antibiotics for the HS, often for weeks on end.
Rebecca said she was prescribed more steroid creams to use while she was on the waiting list for the therapy - but this meant that when she eventually returned for the treatment, she was advised not to have it as her skin had ‘cleared up’.
Thus left her frustrated as she felt the psoriasis would just come back as soon as she stopped using the creams - and it did.
She said she’s had repeated medical referrals to deal with both conditions but so far they have come to nothing despite her chasing them up, and covid has ‘slowed everything down’ even further.
Rebecca has been waiting to go on immunosuppressants since early December, when she was advised this kind of extreme treatment might be her only option.
But she is worried about the potentially severe side effects of the medication but feels so desperate that she feels she has no choice.
Such is her frustration that Rebecca said she has even cried to the dermatologist before because she doesn’t know where to turn.
“It makes me feel really miserable and depressed, and think why do I have to live like this,” she said.
Rebecca has to think twice about doing all sorts of everyday things, like taking her children swimming, or going on holiday, because people stare at her and make comments when she goes out.
She said it’s hard to be happy with her body after suffering with psoriasis for such a long time.
“I just want to be a normal girl my age that can go out, live a normal life, look after my children and bring them up,” she said.
She added: “I just wish that I could go out in the summertime and wear nice clothes, just like any normal person my age would - but I can’t, I have to cover myself, I have to think that everyone is going to be looking at me.
“And me being stressed about the doctors not doing anything about it is making my condition worse.”
There are even times when Rebecca struggles to walk around, or bend down, because of the pain.
“When you use water on your skin it dries your skin out, so when I get out the bath my skin gets so dry I can’t even move,” she said.
As Rebecca is a single mum she often has to force herself to ignore the discomfort and switch into parent mode.
Rebecca feels at a complete loose end, and increasingly like she has nobody to turn to in order to find a solution for her psoriasis.
She hopes sharing her story will also help her get closer to a solution so she can start to live a normal life.
