The Boy Whose Skin Fell Off: How common is EB? Channel 4 documentary on John Kennedy Thu 21 May
The Boy Whose Skin Fell Off focuses on the life of John Kennedy, who suffers from EB, but how common is the condition?
The Boy Whose Skin Fell Off is a classic Channel 4 documentary that originally aired back in 2004.
The documentary tells the story of John Kennedy, who suffers from a genetic condition called Dystrophic Epidermolysis Bullosa.
The programme hits as hard today as it did more than 15 years ago, but its message is equally important – raising awareness for a relatively unknown condition.
However, one question still remains with viewers, how common is EB?
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International Emmy Award winning @Channel4 documentary 'The Boy Whose Skin Fell Off' is on air tomorrow, Thursday 21st at 10pm. It is incredibly moving as it follows the final months of Jonny Kennedy, showing the brutal reality of living and dying with severe EB. #FightEB pic.twitter.com/tvrobvaua7
— DEBRA UK (@CharityDEBRA) May 20, 2020
The Boy Whose Skin Fell off: What is EB?
The documentary’s central focus, John Kennedy suffers from Dystrophic Epidermolysis Bullosa, also known as EB.
This is a rare genetic condition that causes the skin to be very fragile, blistering easily in response to extremely light touches.
EB is caused by a mutation in the COL7A1 gene, which codes for an important collagen that gives “structure and strength to connective tissues such as skin.”
The condition inherited from parents who also carry the altered genes.
According to the US National Library of Medicine, approximately 70% of those with EB have inherited the condition from an affected parent. The remaining 30% develop the condition as a result of a new mutation.
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@cherina82 Have you seen this docu? Sad, but most uplifting ever.
The Boy Whose Skin Fell Off – Channel 4 http://t.co/2n8UhXyX2n
— ruth allum (@mgtruth) November 3, 2014
The Boy Whose Skin Fell off: EB frequency
Estimations for the number of people suffering from EB can vary quite significantly if they don’t specify the type of EB.
“We estimate that more than 5,000 people are living with EB in the UK, and 500,000 worldwide” – DEBRA EB charity.
Across the world, an estimated 20 per million live births are diagnosed with EB and “9 per million people in the general population have the condition.”
However, there is a concern that the true number is actually much higher, with many more cases going unreported in the poorer countries.
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Who is Jonny Kennedy? Star of The Boy Whose Skin Fell Off https://t.co/8sDNlkjCdl What an amazing job @Nell_McAndrew did helping raise awareness… @ebworldcongress @rarediseaseuk @AbiGravitasMag1 @missmcollins @JJWhitesnake @paul_steele @MiaThrives @SnapeyWapey @dameonclarke33
— Phoebe Research Fund (@phoeberesearch) May 20, 2020
The Boy Whose Skin Fell off: EB treatment
Unfortunately, there is currently no cure for EB.
The available treatment involves taking care of any open wounds, pain control, collaring infections and nutritional support.
However, researchers are hopeful that through continued efforts, they can find a cure for EB.
Interestingly, heavyweight boxer Luis Ortiz was named as an honorary ambassador for the EB community by the EB Research Partnership. His daughter, Lismercedes, was born with the condition.
The Boy Whose Skin Fell Off airs tonight on Channel 4 at 10 pm.
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