cure-eb.org

Hi, I’m Sohana, and I have a horrible skin condition called Recessive Dystrophic Epidermolysis Bullosa. I try not to let it get in the way of the things I love doing, like drawing, writing and singing, but there are many things that I can’t do because of EB. There are things that you probably take for granted. Life with EB is painful, difficult, and can sometimes consume the good things, making life a daily battle.

It breaks my heart to know that there is so much money being spent on trivial, insignificant things, when there are children who know nothing but pain.

EB has affected every aspect of my life and I constantly fight to keep a smile on my face but often lose. You’ve probably only seen me smiling and happy but very often, now that I’m getting older, I feel more broken and helpless against this condition which, unless people do great things, will take my life. I’m not uncomfortable with saying that, I have acknowledged that that may be true, but I know that there is hope of defeating EB and we are so very close to doing just that.

 

 

 

Secret poem

‘My secret is made from
The colourful strands of the rainbow
The smell of a brand new book
The dense fur of a polar bear
The taste of a ripe pear

I found it
In the bell of a daffodil
In the silkiness of a rose
And the sweet sound of the sweetest voice

My secret can
End all wars
Allow animals to communicate
Make all problems with genes disappear
And all disease be cured

If I lost this secret
The world would be cold and lonely
Desolate and dangerous forever’

Sohana Collins age 9