DEBRA: working for people whose skin doesn’t work

Just today I was looking at my skin in dismay and wishing that it would be clearer, less irritated and more, well… perfect basically! It is so easy to do that: get fixated on something in the mirror that is not perfect and to lose sight of all the amazing blessings that we do have. To be honest, I didn’t even give this train of thought a second chance until this evening when I read about an organization called DEBRA and started to realise how selfish my grumblings really were!

DEBRA is the national charity working on behalf of people in the UK with the genetic skin blistering condition Epidermolysis Bullosa (EB). EB, or Epidermolysis Bullosa, 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.

EB is likely to affect 1 in 17,000 live births and it is estimated that there are currently 5,000 people with the condition in the UK. Because EB is an inherited condition (it cannot be caught), which is passed on genetically from parents to children, first time parents often do not know that they are carriers and will have no prior warning that the child will be affected, until birth.

The condition has a number of distinct forms. In its least severe forms, 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 affected by the condition, 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. When this condition applies, malnutrition is often a consequence, further reducing the body's resistance to infection.

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.

Whilst considerable progress has been made in recent years in understanding EB and identifying the genes that cause the condition, there is as yet no effective treatment or a cure.

This is where we come in! We can help to support the work of DEBRA by getting involved in the following ways:

·      Organise your own event

·      Get sporty

·      Support DEBRA Shops (including the online shop)

·      Give what you can (donate online, company fundraising, regular donations, legacy donations, etc)

Read some true stories of people suffering from EB.

Get involved in any way that you can!

Blessings!

Ronell x

“For we are members of His body, of His flesh and of His bones.” {Ephesians 5:30}