A Croydon mum of two has described how she has struggled to live with a severe skin condition which sometimes leaves her unable to sleep and unable to do simple things like go outdoors to enjoy the sun.
Rebecca Sayers, 21, from Kenley in Croydon has suffered with psoriasis since she was a child.
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.
Rebecca’s first patch of psoriasis appeared on her face when she was in late primary school, and it wasn’t long before it spread all over her body.
She said other schoolchildren would bully her, telling 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’.
“People even said I look like KFC chicken,” she said.
She is sharing her story in the hope that more awareness is raised about the awful skin condition in the hope that a solution can be found.
She 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.”
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Rebecca said she was prescribed steroid creams throughout her teens to try to control the itchy red patches, but they didn’t have much of an impact.
Psoriasis becomes worse with stress, and it turned a vicious cycle where Rebecca 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 she was 16, Rebecca was also 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.
Meanwhile she was also on strong antibiotics for the HS, often for weeks on end.
She 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’.
Rebecca described how frustrated she felt, knowing 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.
She said she has been waiting to go on immunosuppressants since early December, when she was advised this kind of extreme treatment might be her only option.
Rebecca is worried about the potentially severe side effects of the medication, but feels increasingly desperate about her skin, and like she has no choice.
She 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 said the condition means she 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.
She said being a single parent to her children, who are 1 and 3, means she often has to force herself to ignore the discomfort and switch into parent mode.
Rebecca said: “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.”
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 help raise awareness about the skin condition, and help her get closer to a solution so she can start to live a normal life.
More information about psoriasis is available here.
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