Dellaroundtheworld for DebRA

I first became aware of the charity DebRA and the condition Epidermolysis Bullosa (EB) through the River Walking fundraising events undertaken by East Yorkshire Businessman Graham Boanas. Intrigued to find out what could possibly inspire a man to cross 3 Rivers - by walking on the riverbed - underneath the water - I visited the DebRA website to find out more. I was both horrified to hear of the ordeals that the children with the condition and their families went through, on a daily basis and also inspired by the courage and the spirit that these same people showed.  Below is a brief summary about EB and the work that DebRA does but please also visit www.debra.org.uk to find out more. Read some of the Real Life Stories and I challenge you to not feel inspired enough to do some fund-raising yourself or at least visit www.justgiving.com/dellaroundtheworld-DebRA and donate what ever you can.  Thank you.

About EB

Epidermolysis Bullosa (EB) is a very rare genetic condition in which the skin and internal body linings blister at the slightest knock or rub, causing painful, open wounds.

In its mildest form, the blistering is confined to the hands and feet making holding things and walking extremely painful. In more severe forms all the body is affected and the wounds heal very slowly, giving rise to scarring, physical deformity and significant disability.

For many the blistering is not limited to the skin but also affects the inner body linings such as the mouth and oesophagus. The eating of solids is, in these cases, almost impossible, and the disposal of the body waste incredibly painful. People with the more severe types of EB also have an exceptionally high risk of developing skin cancers, shortening their lives by approximately 30-40 years. In its most severe form, the condition is fatal in infancy.

About DebRA

In the UK DebRA is the main funder of specialist EB treatment and research facilities at national or regional level. People affected by EB therefore not only rely very heavily on DebRA-funded research to provide a long term answer to the illness, but are also very dependent on the range of specialist support services provided by the charity.

DebRA provides:

• Travelling nurses able to visit children and adults in their homes.
• Clinics, including one-stop shops where nurses, consultants, a dentist, dietician and other specialists all see the patient in one day.
• Equipment such as computers, air conditioning units etc.
• Respite holiday accommodation for families under severe pressure