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'Boys With No Skin' Documentary Raises EB Awareness

'Boys With No Skin' Documentary Raises EB Awareness

Did you see 'Extraordinary People: The Boys with No Skin' on Channel 5 yesterday?

If you missed it, you can still watch it here.

A personal insight into life with EB

'The Boys With No Skin' features 17-year-old Jonathan Gionfriddo and 11-year-old Charlie Knuth, who both have Dystrophic Epidermolysis Bullosa (EB) and gives a personal insight into what their lives  with the painful skin blistering condition are like.

EB research taking place

Charlie took part in a clinical trial where he received a donor’s bone marrow that released stem cells which improved the condition of his skin. Now he's hoping to take part in a gene editing clinical trial.

Read our Q and A on the research.

Fear of medical intervention

The programme also talks about Jon's deep-seated fear of medical intervention. If you or your child has a fear of medical intervention like Jon, there is help available for both children and adults living with EB.

Talking to a psychosocial specialist can help alleviate fears and anxieties. Contact your EB nurse or doctor for a referral to a psychosocial specialist.

Questions about cancer in EB

People with Dystrophic EB like Charlie and Jon face an increased risk of developing an aggressive form of skin cancer at some point in their lives. Read our Q and A on cancer in EB.

Read more about the Bone Marrow trial here.

Want to find out more about EB? Browse our information about EB or email debra@debra.org.uk to find out more.

To hear more stories from the EB Community and find out what you can do to #FightEB, visit www.FightEB.org.uk

Image credit: Channel 5 and Barcroft Productions

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