11-year-old skin disease sufferer from Barnsbury goes on awareness campaign

Young campaigners and their bus, raising awareness for EB week and the Sohana Research Fund

Young campaigners and their bus, raising awareness for EB week and the Sohana Research Fund - Credit: Archant

A giant butterfly named Binky was paraded around the streets of London on a bus last week to raise awareness for a rare skin disease.

Sohana Collins, 11, from Barnsbury, suffers from Epidermolysis Bullosa (EB), a condition that causes internal and external blistering and skin loss at the slightest friction.

As part of EB awareness week which took place between October 25-31. Sohana and friends set out to educate people about the condition and promote the Sohana Research Fund which was set up by her parents Sharmilla and James.

Sohana’s mother Mrs Collins, said: “EB is a very painful, very debilitating condition that requires extensive hospital management and care.”

“We are gently reminding the government during EB awareness week that our children deserve a right to life too and a life free from pain.

“If promising treatments come through we absolutely need the government to help at that stage.”

The butterfly is the symbol most commonly associated with EB, because of the delicate nature of the skin of sufferers.