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Cate Kenworthy avatar
Cate Kenworthy

Tis the Season

I am fundraising for The British Porphyria Association because my dad and son suffer from XLP

29317 %
£293.17
raised of £1 target
by 9 supporters
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The British Porphyria Association

It aims to improve the understanding of Porphyria, by reaching out to patients, relatives, doctors and medical staff, etc. Early diagnosis is vital if we are to improve the quality of life for those affected by it. It also provides a social support system for sufferers and their families

Charity Registration No. 1089609

Story

My dad and 3 year old son suffer from an ultra rare genetic disease called X-linked protoporphyria.  Long story short, they have an abnormal sensitivity to the sun that causes severe pain, burning, and itching even after only moments in the sun.  While in most cases it is not life threatening, there is a small risk of severe liver damage requiring a transplant and it is extremely inconvenient when trying to live a normal life.  Imagine not being able to play with your friends or siblings outside, go to the beach or drive your car without covering the windows... While there is no cure, there is a treatment for adults available in a few countries that unfortunately does not include the UK.  But good news! it was just approved last week in the USA where my dad lives, so at 73 years old he'll finally be able to enjoy the sun like we do! 

The disease is poorly understood and rarely researched making it difficult to find a cure or treatment.  The BPA has been and continues to be instrumental in raising awareness; encouraging/funding research; supporting those affected directly and indirectly by the disease, and helping to push NICE/NHS to make the aforementioned treatment available for adults in the UK (sadly nothing for kids yet).  I would be very grateful for your support of the BPA and this case.

You can read more about the BPA here: http://www.porphyria.org.uk/our-aims/

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