Hi i am Joining Simon Moore who is attempting an ultra long distance event starting with a 22 mile swim (the distance of the English Channel) at Barton Marina, Staffordshire. 

I am a Trustee of the Cystinosis Foundation UK and i also have a mild form of the condition. I want to raise the awareness of Cystinosis by joining in with this swim i had never heard of the condition until i was diagnosed a few years ago so i am now trying to help others with the condition.  The Cystinosis Foundation UK is supporting a number of projects at universities in the UK, as well as several other studies. Every penny we raise will go towards this research.

 

What Is Cystinosis?

Cystinosis occurs when the mechanism, which removes excess cystine, breaks down. It then accumulates within body cells preventing these cells from functioning correctly. This initially leads to kidney problems and progresses to other parts of the body, including the thyroid gland, eyes, liver and impaired growth. In the past, it was rare for Cystinotics to survive into adulthood. Currently, there is no cure for Cystinosis and most Cystinotics have a strict 6 hourly regime of foul tasting medication.

The Cystinosis Foundation UK is helping to support research that will help to find a cure and improve the medicines available to treat Cystinosis.