DEBRA

For other uses, see Debra (disambiguation).
UK DEBRA logo

DEBRA (formerly known as DebRA) is the name of an international medical research charity dedicated to the curing of Epidermolysis Bullosa with National Groups in over 40 countries (including the British and American) and growing.[1]

Debra is the first name of the daughter of Phyllis Hilton, the original founder of the organisation in the UK, which began as a support group for parents, guardians and carers of other young children with the condition.

Although the backronym of Dystrophic Epidermolysis Bullosa Research Association has been used by DEBRA UK in the past, the organisation provides information, research funding and support for all forms of EB, not just Dystrophic, which is one of three main sub-types of the condition: the others being EB Simplex and Junctional EB.

The DebRA US organisation have continued to use the aforementioned acronym DEBRA for the Dystrophic EB Research Association of America since their formation in 1980.

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.

In the UK

DEBRA UK is the national charity that supports individuals and families affected by Epidermolysis Bullosa (EB) – a painful genetic skin blistering condition which, in the worst cases, can be fatal. There are at least 5,000 people living with this devastating condition in the UK and 500,000 people worldwide. EB has a number of distinct forms: in the least severe form, blistering is confined to the hands and feet. In more severe cases, the whole body is affected and wounds heal very slowly, giving rise to scarring, physical deformity and significant disability. Blistering can also affect inner body linings, such as the mouth and throat and, in its most advanced form, EB is fatal in infancy.

DEBRA UK was founded in 1978 and provides an enhanced specialist EB Nursing Service, in partnership with the NHS, to deliver optimal healthcare to children and adults living with EB and community support staff to work directly with families. The charity also commissions world-leading research into the condition with the aim of finding effective treatments and, ultimately, a cure for EB. DEBRA UK has over 100 charity shops across the country run by combination of paid sales staff, volunteers, and people gaining work experience. Donations and proceeds from shops fund services for Epidermolysis Bullosa affected families and medical research into the condition.[2] DEBRA UK's fundraising shops participate in the UK government's forced unpaid work programme where benefit claimants must work 20 to 40 hours per week uncompensated for periods that can be as long as 6 months.[3]

In the United States

debra of America was founded in 1980 by Arlene Pessar and her son, Eric Lopez, who was born with Epidermolysis Bullosa (EB) [4] It is the only U.S. nonprofit organization that provides all-inclusive support to the EB Community, through funding research for a cure and by providing free programs and services for those with EB. The mission of debra of America is to improve the quality of life for all people living in the Unites States with EB, their families, and caregivers through free programs and services while funding research to find a cure and treatments for Epidermolysis Bullosa.[5]

In 2015, debra of America launched a series of TV and web commercials alongside a campaign titled #ItWontHurtToWatch. These commercials, produced by award-winning health and wellness advertising agency HAVAS Worldwide Tonic, are meant to spread awareness of the debilitating rare disease.

Other Countries

See the list of National Groups at DEBRA International.

See also

References

  1. ↑ About DEBRA International
  2. ↑ DEBRA Shops
  3. ↑ BoycottWorkfare
  4. ↑ About DebRA US Accessed April 2015
  5. ↑ "About debra of America - Dystrophic Epidermolysis Bullosa Research Association". www.debra.org. Retrieved 2016-03-28.

External links

This article is issued from Wikipedia - version of the 11/2/2016. The text is available under the Creative Commons Attribution/Share Alike but additional terms may apply for the media files.