The Hesseldens

DEBRA has been a fantastic support to my family for many years, providing practical advice and continued encouragement to 3 generations of Hesseldens. This year I am running the Great North Run to raise money for this little-known but amazing charity.

My Grandad, Ron Hesselden, was born with a rare genetic skin condition, epidermolysis bullosa (butterfly skin) which causes blistering at the slightest touch. He was, until his death at 97 years of age, the oldest person in the UK living with EB.  The condition has also impacted my Uncle Paul and cousin Gillan, who continue to battle with its effects on a daily basis.

About DEBRA UK – The leading EB charity

Who we are

We are a UK EB charity; a national medical research charity and patient support organisation for anyone in the UK living with an inherited form of EB, their family members, carers, plus healthcare professionals and researchers specialising in epidermolysis bullosa (EB).
We also provide community support services for people living with acquired EB, known as epidermolysis bullosa acquisita (EBA).
The charity was established in 1978 by Phyllis Hilton, whose daughter Debra had EB, as the world’s first EB patient support organisation.
DEBRA UK went on to establish DEBRA International, which now runs independently to help establish and support a global network of over 50 DEBRA patient support organisations.

debra.org.uk