Brave teen battling rare skin disorder is ‘Pride of Britain’
PUBLISHED: 13:00 08 October 2015
In many ways, Sohana Collins is just like any other 13-year-old: she goes to school, she’s obsessed with Harry Potter and enjoys playing with her family’s puppy.
However, she also has a rare and debilitating skin condition, and is painfully aware that there are lots of things that she will never be able to do.
Sohana, who lives with her parents and three sisters in Barnsbury, was born with the genetic disorder recessive dystrophic epidermolysis bullosa (RDEB).
This life-threatening condition means that she has never known a day without pain. Because her body lacks a protein that binds skin together, she blisters at the slightest knock or rub, which can also cause excruciating open wounds.
The skin in her mouth and eyes is also affected – so she usually eats only blended food – and she can go temporarily blind for days at a time.
To avoid the worst effects of her condition, she attends school with a full-time carer, has to apply ointment to her eyes every 30 minutes and needs to wear gloves indoors.
She is able to participate in most lessons – her favourite subjects are English and art – but can’t play any sports. Even even walking down a corridor at school poses risks.
Despite constant pain, however, Sohana has used her experience to help others suffering from the same condition. And last week she was named the Teenager of Courage at the Mirror’s Pride of Britain Awards, where she met several celebrities, including Harry Potter star Rupert Grint, comedian Jimmy Carr and X Factor judge Simon Cowell.
In early 2011, Sohana’s parents Sharmila Nikapota and James Collins set up the Sohana Research Fund to raise money for medical research into RDEB, with Homeland star Damian Lewis as patron.
In 2013, the charity funded a clinical trial at Great Ormond Street Hospital involving the infusion of donated bone marrow cells, which doctors hoped would help the skin of sufferers to heal.
“There was improved healing, reduced itching, fewer blisters and the children seemed a lot happier,” Ms Nikapota said.
Unfortunately, the results were short-lived, and Sohana’s condition deteriorated seven months after her treatment.
Nevertheless, she and her family have remained positive. To date, they have raised £3.5million, some of which is being used to fund further clinical trials.
Ms Nikapota said: “It’s very difficult to ask a child to talk about her condition because it’s so painful for her. But she does it with humour and honesty, which makes it a very powerful message.
“She tries to ignore the condition as much as possible. She just wants to be a normal little girl. And that’s what we try and give her as much as possible.”
Last week’s award was presented by ex-England football captain David Beckham, who said it was an honour to celebrate “such an amazing young lady”.
Speaking after the awards, Sohana said: “The whole night was amazing and very exciting – but the most exciting bit was meeting Rupert Grint and David Beckham.”
For now, the future of the 8,000 sufferers of RDEB in the UK remains unclear. But Sohana’s mother remains convinced that a lot more can be done.
“There’s no time to waste – there’s hope of gene therapy treatment and potentially even a cure out there,” she said.
“Yet there’s massive underinvestment in research into rare diseases and it’s hard to get hold of research funding.
“With £5million, we could buy a bio-reactor for Guy’s Hospital which would produce mesenchymal stem cells (MSC) to treat the condition, as well as research into the corneal abrasion that people get with RDEB.”
If you value what this story gives you, please consider supporting the Islington Gazette. Click the link in the orange box below for details.