Faces of EB
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EB Simplex and how it impacts my son

by Allison

I gave the faulty gene to my lovely son.

He has struggled with EBS so much. He can’t play his beloved rugby. He can’t walk really without pain. He is struggling to stay in employment and independent as he needs to stand all day. He still tries to smile. And does not want his mates to know what he has – he is embarrassed and ashamed.

We suffer as a family with EBS from my father’s side. I hate that I passed it on to him. And while I too suffer, he does more. He is in constant pain but smiles through it – he is my hero.

Image of EBS patient's foot
Image of EBS patient's foot


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