11-year-old skin disease sufferer from Barnsbury goes on awareness campaign
- 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.
You may also want to watch:
“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.
- 1 Man in Highbury court charged with shooting gun in High Holborn
- 2 Kacem Mokrane: Islington man amongst seven charged with 2017 murder
- 3 Tony Eastlake: Man denies murder of ‘flower man of Islington’
- 4 Council fund boosts plans for Islington 'urban forest'
- 5 Islington community charity launches with sunny street party
- 6 'Islington drivers – you don't always need to overtake cyclists'
- 7 Missing teenagers from Dagenham may be in Islington or Haringey
- 8 Consultation launches on St Peter’s people-friendly streets scheme
- 9 Jeremy Corbyn joins campaign to protect human right Article 25
- 10 Parliament Square demo: Protesters call on government to end cladding crisis