Hi!

It is now only 10 days till the Great North Run 2009 and I am officially pooping myself!  I was chatting last week with a good friend and was led to conclude that there may be a previously unrecognised similarity between GNR and childbirth - it appears that once it is all over you forget about the pain (hills) and only remember the good bits! (I could have sworn it was a relatively flat course until reminded by my running buddy!)

So, now that I have hopefully made you feel sorry for me - Oh, by the way, did I mention that I was struck down by an injury last week that meant I could scarcely walk, let alone run, and it looked like I might not make it to the start line (is that worth another 10p/mile?!?) -  I hope you will help me support a fantastic charity, DebRA.

Some of you may be familiar with DebRA if you saw the documentary "The Boy Whose Skin Fell Off" about Jonny Kennedy.  If you haven't seen it I strongly recommend you hop onto the channel 4 website or youtube and take a look, but be warned, do not watch it without a bumper sized box of tissues.  I defy any of you to watch it without feeling a compelling urge to support this charity.

There is some more information about DebRA at the bottom of this page which I encourage you to read but for now I just want to thank you for your support.  I really, really appreciate it.

And by way of a thank you for visiting my page I will let you in on a little secret that you wouldn't otherwise find out ....

There is a very strong likelihood that I am going to be .... gulp ..... running ...... the....... LONDON MARATHON for DebRA next year!!!!!!!!!

(There is a part of me that thinks that if I run a marathon I should do it for a mental health charity as mine definitely needs testing to even consider taking on that sort of challenge but I am reliably informed that what doesn't kill us makes us stronger!)

Thanks again for your generosity

C x

 

ABOUT DEBRA

DebRA is the national charity working on behalf of people in the UK with the genetic skin blistering condition Epidermolysis Bullosa (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.

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.