A 16-year old teenage girl Sohana Collin is suffering from an incredibly rare and painful ‘butterfly skin’ condition that makes her skin so fragile that her parents cannot even hug her. It is normal for Sohana to wake up with a lot of blood on her pillow as she bleeds a lot overnight. She gets blister and wound with the slightest rub.
Sohana suffers from Epidermolysis Bullosa or EB, a rare genetic condition commonly referred to as the butterfly syndrome because the skin is as delicate as a butterfly’s wings. It means she lacks the protein that holds her skin together. It affects her entire body – even in her mouth, throat and eyes. She struggles to eat and have most of her food in blended form.
Life is a daily battle for a teenager, Sohana doesn’t remember the time when she was completely pain-free because normally there is always something hurting. She added that she doesn’t go around her daily life thinking ‘that hurts’ but she doesn’t remember a time when there was nothing hurting.
Sohana is the oldest among her four siblings and is the only one born with a special condition. Every day is the battle for her and mom Sharmila who is always around helping her girl. Mom Sharmila said that Sohana hides her pain. She never complains. She doesn’t resent that her sisters can run around and ride bikes without pain – she’d love to do those things and dreams about it. You can see in her eyes she is desperate but she just deals with it”. Sohana’s courage is the inspiration behind the Sohana Research Fund. Since 2011, more than £3.5million has been raised to help find a cure for EB. She goes through hours of pain treatment that can make her life better, researchers are still working on the cure of the general disease. Her story is an inspiration for many and her efforts have named her Pride of Britain Teenager of Courage.
We often take it for granted that we can hug or cuddle people we love that most. The story of Sohana could be so upsetting yet so inspirational – she is an extraordinary young lady. A 16-year old teenage girl Sohana Collin is suffering from an incredibly rare and painful ‘butterfly skin’ condition that makes her skin so fragile that her parents cannot even hug her. It is normal for Sohana to wake up with a lot of blood on her pillow as she bleeds a lot overnight. She gets blister and wound with the slightest rub.
Sohana suffers from Epidermolysis Bullosa or EB, a rare genetic condition commonly referred to as the butterfly syndrome because the skin is as delicate as a butterfly’s wings. It means she lacks the protein that holds her skin together. It affects her entire body – even in her mouth, throat and eyes. She struggles to eat and have most of her food in blended form.
Life is a daily battle for a teenager, Sohana doesn’t remember the time when she was completely pain-free because normally there is always something hurting. She added that she doesn’t go around her daily life thinking ‘that hurts’ but she doesn’t remember a time when there was nothing hurting.
Sohana is the oldest among her four siblings and is the only one born with a special condition. Every day is the battle for her and mom Sharmila who is always around helping her girl. Mom Sharmila said that Sohana hides her pain. She never complains. She doesn’t resent that her sisters can run around and ride bikes without pain – she’d love to do those things and dreams about it. You can see in her eyes she is desperate but she just deals with it”. Sohana’s courage is the inspiration behind the Sohana Research Fund. Since 2011, more than £3.5million has been raised to help find a cure for EB. She goes through hours of pain treatment that can make her life better, researchers are still working on the cure of the general disease. Her story is an inspiration for many and her efforts have named her Pride of Britain Teenager of Courage.
We often take it for granted that we can hug or cuddle people we love that most. The story of Sohana could be so upsetting yet so inspirational – she is an extraordinary young lady.
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