Sohana Collins who suffers from Epidermolysis bullosa (EB)
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The girl who is in pain every minute of every day

Sohana Collins is 11 years old and lives in London. She suffers from Epidermolysis Bullosa (EB), an inherited disease that affects the body's connective tissue such as the skin and mucosal membranes in the throat and the eyes.

Because the disease disrupts the connectivity between the different layers within the skin and membranes, it is very fragile and easily tears or blisters.

Sohana has the severe form of the condition and is constantly covered in sores and blisters across her body, she struggles to eat properly and she is always in pain.

Each morning and night her mother, Sharmila, must check Sohana's skin for new injuries, prick any blisters before they have time to grow and change her dressings.

There is no adequate treatment or cure for the condition but now several avenues of research are being pursued in hope of bringing some relief to sufferers of EB.

Sohana is one of 10 children involved in one such trial, at Great Ormond Street, to use mesenchymal stem cells in the hope that they will temporarily improve the body's healing abilities.

Here her mother Sharmila talks about what it is like having EB, and we hear from Sohana herself, about how the trial is going so far.

  • 29 Nov 2013
  • From the section Health