THERES ALWAYS HOPE....please show your support for Ian

HI ALL,

This is to see if we can get help with D.E.B.R.A'S funding and also to try AND GET A SCOOTER FOR IAN,Ian is a 30 year old man as has suffered with this condition from birth,recently he has deteriated for the worse and in is need of a scooter but due to funding he can not have this, I have taken it upon myself to contatc local papers,mps, and even have this petition up and running in hoping we can actually do something for him and maybe the charity D.E.B.R.A so please show your support in this as I will be grateful and I know Ian's family would be too xx

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.

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. At its mildest, 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.
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