Tuesday, 21 April 2015

Boy, 14, talks about living with a blistering skin disorder

 Jonathan Pitre suffers from Epidermolysis Bullosa - a condition that makes the skin so fragile, that it is termed 'butterfly skin.'

You never know exactly what EB is unless you have it... just the feel of it, the pain that you live in every day,' the bandaged teenager remarks in an interview with the Ottawa Citizen.

'Even when I'm sleeping, when I'm dreaming, I still am sort of conscious because I feel that pain.'

Unless a cure is found, Jonathan will likely only live to 25.


But in a tone well beyond his years, Ottawa-based Jonathan says frankly: 'I just have to get on with it.'
With his body covered with deep blistering wounds that will never heal, the condition has outlined Jonathan from many childhood activities.

A sports fanatic, he played hockey and loved gym class until his condition meant he could not compete with the other children. Now, he hopes to be a sportscaster someday.
'

He admits there is a 'nagging' feeling at the back of his mind every day that 'I only have 10 years left.'
But for now, he's trying to 'live in the moment.'
'Great things do not come easily,' he told an audience at National We Day last week.
'But they do come when you try with your full heart, when you're willing and open to embrace life, when you take things one day at a time and use what you've got.'
His mother, Tina, said it is a struggle every day as she bathes him, knowing he is in pain.
However, she cherishes the silver lining: 'I see him every day waking up with a smile.'



Facts on Epidermolysis bullosa
  • Epidermolysis bullosa (EB) is a general term used to describe a group of rare inherited skin disorders that cause the skin to become very fragile.
  • Any trauma or friction to the skin can cause painful blisters.
  • Mason has the rarest form of EB where blistering occurs at the junction between the epidermis and the dermis.
  • In most cases, the symptoms of EB are obvious from birth.
  • It is caused by faulty genes inherited from one or both parents.
  • There are many cases when both parents are carriers of the faulty gene without realising it.
  • EB is rare. Just one in every 17,000 children has it. 
  • There is no cure for EB so the treatment aims at preventing blisters becoming infected. 







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