Islington mum runs third marathon in three months to help heal her daughter’s skin
- Credit: Cure EB
A mum-of-four ran her third marathon in three months on Sunday to raise money to cure the debilitating disease suffered by her daughter.
Sharmila Collins’ daughter Sohana, who is 18 and lives in Barnsbury, has the genetic condition epidermolysis bullosa (EB), which leads to blistering and skin loss at the slightest friction and burn-like wounds that cause constant pain.
Repeated damage to the skin leads to progressive disability, and severe forms of the disease are life shortening due to an aggressive skin cancer that can develop in early adulthood.
Sharmila ran 26 miles around Regent’s Park yesterday to raise funds for Cure EB, the charity she set up with her husband James in 2011, which has its HQ in Grays Inn Road.
It was founded to fund medical research in search of a cure for the condition, and has a focus on gene modifying and gene corrective strategies.
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Sharmila told the Gazette: “I have a bit of a dodgy knee, but I am not trying to break any records and am taking it very slowly.
“Any pain or discomfort I have is nothing to the pain and suffering that people with EB have to endure on a daily basis.
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“Watching my eldest daughter Sohana suffer the pain of EB every day is the best incentive to try and accelerate research into clinical trials to find treatments for all.
“I hate running, but I hate EB more - and the more funds we can raise, the closer we can get to a cure.”
After years of painstaking basic research, clinical trials for treatment are now in progress in the UK and around the world, which could prove to be life changing for EB sufferers.
Sharmila continued: “The more funds that Cure EB can raise, the closer they can get to effective treatments and even a cure, giving hope to sufferers like Sohana that one day they may be able to do the simple things that so many of us take for granted, like eating and walking - and maybe even running - without pain.”
Sohana added: “There is only one thing in my life that I hate and that is EB.
“I have never had a day with no pain and it is almost torture to watch people do things that I can’t.”