Islington Pride of Britain teenager shows the pain behind her smiles
PUBLISHED: 13:00 14 November 2015
Islington teenager Sohana Collins with a rare debilitating condition releases video to raise funds for research.
Pride of Britain Teenager of Courage, Sohana Collins, 13, from Islington lives a life of pain due to a rare condition which means her skin blisters and tears at the slightest friction.
Sohana who lives with her parents and three sisters in Barnsbury, suffers from Recessive Dystrophic Epidermolysis Bullosa a condition caused by a lack of a protein that holds the skin together causing blisters that affect her eyes and throat.
The condition affects every aspect of her life meaning she usually eats only blended food and attends school with a full-time carer and has to apply ointment to her eyes every 30 minutes.
However despite her pain Sohana wants to help others and in a heartrending video she sings through her pain to give an insight into the daily suffering caused by her condition.
The video has been released by the The Sohan Research fund set up by her parents to help find a cure for the disease which sees most sufferers die before adulthood.
Pioneering work at Great Ormond Street using gene editing technology has given hope to many that a cure may be possible.
There is no government funding for the research and the SRF is funding two adult trials in London looking at treatments for children and adults alike.
To find out more details are on the Sohana Research Fund website.