Stories Of People With Rare Diseases

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With 1 in 17 people affected by rare disease you would think everyone would be interested to learn about the huge impact it has on individuals, their families and communities and yet sadly this is not the case. In the years since the photographer Ceridwen Hughes’ son was diagnosed, he has met hundreds of families affected by rare disease and the one thing most report feeling is isolated, because there is so little understanding. With an estimated 6000 rare diseases affecting 35 million people across Europe alone he wanted to create a project that encouraged people to want to know more.

The Beauty of Rare project introduces people to a selection of rare diseases and with each image he has tried to include quirky aspects to the condition or its impact. Each image is accompanied by the individual's own story in which they share how the disease affects them.

The project cannot make people better or help them find a miraculous cure but it can help people who feel isolated and in need to reach out to their community, breaking down barriers of isolation.

#1 Without The Drug Trial Maddox Would Not Be Here Today

Maddox has a rare genetic disorder, which is a perinatal form of Hypophosphotasia (hpp). "We feel really lucky that we were in the right place at the right time and we had access to the drug for Maddox because without it he would not be here now."

#2 Toni's Three Children Were Affected By Niemann Pick Disease

"I didn't want anyone's pity and I still feel I don't need it... if someone says to me have you got children, and then I tell them our story, I can see pity in their eyes. I don't want that, I want them to listen and understand that I am very grateful for the experiences I've had and the time that we had with our children."

#3 Eddie Is Affected By Infantile Spasms And The Only Thing That Helps Is A Cannabis Compound Called CBD

"Eddie's a boy who is seriously held back by his condition. I suppose in a way, I don't entirely know who he is because of the fact he's not developing and that's pretty much because of the seizures."

#4 Lucy Often Dislocates Different Parts Of Her Body Due To EDS

"If I could tell people one thing it would be that having a rare disease does not make you a weirdo. We're just as normal as you, we just have a few quirks... I just want people to treat me normally and accept our differences."

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