DEBRA
Encyclopedia
United Kingdom
The United Kingdom of Great Britain and Northern IrelandIn the United Kingdom and Dependencies, other languages have been officially recognised as legitimate autochthonous languages under the European Charter for Regional or Minority Languages...
medical research
Research
Research can be defined as the scientific search for knowledge, or as any systematic investigation, to establish novel facts, solve new or existing problems, prove new ideas, or develop new theories, usually using a scientific method...
charity
Charitable organization
A charitable organization is a type of non-profit organization . It differs from other types of NPOs in that it centers on philanthropic goals A charitable organization is a type of non-profit organization (NPO). It differs from other types of NPOs in that it centers on philanthropic goals A...
dedicated to the curing of Epidermolysis bullosa
Epidermolysis bullosa
Epidermolysis bullosa is an inherited connective tissue disease causing blisters in the skin and mucosal membranes, with an incidence of 1/50,000. Its severity ranges from mild to lethal. It is caused by a mutation in the keratin or collagen gene....
. Epidermolysis bullosa is a genetic condition that in its most severe forms affects all of the body's linings, the skin, the linings of the mouth and oesophagus, etc - even the eyes. In its most severe forms the linings will blister or rip away from the flesh under the lightest of frictions, for example, rolling over in bed can cause skin to tear away from behind the ears, and the sufferer may wake up with up to 30 blisters each morning.
There is no treatment bar the lancing and draining of these blisters to stop their growth. Sufferers of the severest form die prematurely of skin cancer (their life expectancy is usually reduced by 30-40 years); in some, death occurs in infancy. Each day sufferers face a battle against fluid loss and infections due to open wounds. Sufferers of the severest forms have difficulties with feeding due to the rawness of their mouths and often have to have a feeding tube fitted. There are milder forms of the condition that only affect the hands and feet.
The charity DebRA U.K. provides vital support to sufferers in the forms of Specialist Outreach Nurses that will visit a newborn baby in hospital and provide advice to staff and parents of how best to handle and care for the child, a service that is continued in the home with regular follow up visits. DebRA U.K. also has a team of Support workers that will help families face the financial burden of having an EB child, by helping provide specialist equipment that is necessary and where financial aid is unavailable from other sources.
The charity was set up on July 22, 1978. The condition and the charity are mostly unheard of due to the rareness of the disease and the fact that DebRA U.K. has no advertising budget, as the majority of funds is spent of supporting families and sufferers and on a portfolio of research projects that explore many different aspects of the condition in the hope that an effective treatment will be found to end the curse of EB. To sum up, DebRA U.K. is working for a life free of pain for all EB Sufferers.