Thanks for taking the time to visit my JustGiving page.

I  have registered to run the Manchester Marathon in October 2021 in order to raise money for the cystinosis Foundation UK which support patients with Cystinosis and families and promote research in to the condition.

As many of you know Maeve was born with a rare genetic condition called cystinosis. There are  only  2 or 3 new cases of cystinosis diagnosed each year in the UK. Cystinosis is a life limiting condition,  causing Kidney damage with patients often needing a Kidney  transplant.  Managing the symptoms of Cystinosis requires large quantities of medication,  Maeve takes 24 tablets a day, and three sets of eyedrops, one of which is taken every hour. 

Cystinosis causes an increase of a  an amino acid called cystine in the body. This build up causes cystine crystals to form in many organs of the body.  These crystals form firstly in the kidneys and the eyes, and later in the muscles, pancreas, thyroid gland and white blood cells. left untreated  most children with cystinosis will later develop kidney failure before the age of ten requiring dialysis or a kidney transplant. The build up of cystine also cause weakness and wasting of the muscles including in the throat leading to  swallowing and feeding difficulties. the eyes are also damaged, leaving patients with light sensitivity, and a constant gritty feel in their eyes.  

Cystinosis can be managed through a range of medications,  but it can't be cured.  medication  can help to reduce the symptoms but does not remove them completely,  particularly many patients will still need a kidney transplant at an early age, and expect a shorter life expectancy.  

the Cystinosis foundation aims to provide support to anyone diagnosed with cystinosis, as well as their family. To highlight the disorder to members, the medical profession,  and the wider community. To assist in the promotion of research into the treatment of cystinosis.

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