On the 19th February, The Countess of Wessex (Debra‘s Patron) met with very inspirational young man, James Dunn. James suffers from severe skin condition called epidermolysis bullosa. Epidermolysis Bullosa (EB) is a rare genetic connective tissue disorder with no treatment or cure. There are many genetic and symptomatic variations of EB, but all share the prominent symptom of extremely fragile skin that blisters and tears from minor friction or trauma.
|photo via Debra website|
Internal organs and bodily systems can also be seriously affected by the disease. EB is always painful, often pervasive and debilitating, and is in some cases lethal before the age of 30. EB affects both genders and every racial and ethnic background equally. Daily wound care, pain management, and protective bandaging are the only options available for people with EB.
Very recently James had to undergo an operation and had his left hand amputated due to cancer, it was to stop the cancer growing and spreading. Sadly, only few weeks after the amputation James learnt that the cancer was back. But nothing will stop this young man, James is fulfilling his dream to take portraits of famous people to raise money to help find a cure for his own deadly skin condition.
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This past Monday, James was invited to Buckingham Palace to meet with Sophie and to take her portrait. James, alongside other members of the EB Community, is taking part in DEBRA’s #FightEB campaign, which aims to raise £250,000 by Rare Disease Day on 28 February. He hopes that this portrait will help him achieve this target. So far, the campaign has raised over £230,000. If you would like to help, go to http://fighteb.org.uk/
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On the very next day, James joined Good Morning presenters, Kate Garaway and Susanna Reid, to share his experience by discussing his recent surgery to combat cancer caused by his EB, the #FightEB campaign and a DEBRA funded clinical trial that could offer new hope for the future. If you missed this programme, you can still watch it by clicking here.
|photo via Debra Twitter|
If you would like to learn more about James, I recommend his website at http://wheelygoodphotography.co.uk/, you can also follow him via Twitter (here), Instagram (here) & watch his vlogs via Youtube, here. I also recommend reading this article by Liverpool Echo. For Debra’s press release, click here.
On a private note, I had & have some battles to fight, but his battle makes you put everything into a very different perspective. Seeing him and his incredible attitude is a real eye opener. James – You keep on fighting! Do not give up.