Hi there, I was diagnosed with PXE in the summer of 2013 and since then my mum and dad have been wondering what they can do to help find ways of combatting the various illnesses related to the disease. So, in addition to the dietary and healthy lifestyle that l have to try lead my mum and dad have been fundraising to help raise awareness and money to help international research into PXE.

I decided last year that I would start to raise awareness and money too. Last year I entered the Water Wipeout and I’m doing it again this year, just to try and help raised a little bit of money for research into this rare genetic disease I have.

About PXE

Pseudoxanthoma elasticum, PXE, is an inherited disorder that causes select elastic tissue in the body to become mineralised, that is, calcium and other minerals are deposited in the tissue. This can result in changes in the skin, eyes, cardiovascular system and gastrointestinal system. PXE was recognised over a hundred years ago. It affects approximately 1/50,000 people making it a rare genetic disorder.

So, if you can, please help raise as much as possible to help make my future, and all those diagnosed with PXE, a much brighter and healthier one. All monies raised go directly to helping research into the disease and eventually finding a way to tame it.

Thanks so much for your support.

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