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 my own son was diagnosed, I have 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 I 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 I have 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.
More info: samebutdifferentcic.org.uk
#1 Jack Was Diagnosed With Duchenne Muscular Dystrophy At Just 2 Years Old
“He looks healthy but that’s the heartbreaking thing, because at the end of the day, his muscles are wasting away and he is dying.”
#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 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.”
#4 Lizzie Was Diagnosed With Huntington's Disease At 16 And Is Now 26 And Living In A Care Home
“All Lizzie ever wanted was children. She just wanted a nice house and children. Four children she wanted, and she would have made an amazing mum.”
#5 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.”
#6 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.”
#7 Jonathan Has Watched How Huntington's Disease Has Affected Both Siblings
“The worst part of the condition? The end probably. Seeing my sister and my brother and the way it has affected them, but at this point I’m just trying to be positive. That’s all I’ve ever done.”
#8 Meliz Needs A Blood Transfusion Every Three Weeks
Meliz has Beta Thalassaemia Major which is a blood disorder that reduces the production of hemoglobin. Hemoglobin is the iron-containing protein in red blood cells that carries oxygen to cells throughout the body. “One of the hardest aspects of the condition for me is the tiredness. My back also sometimes throbs because of where the bone marrow is trying to produce more blood cells when I am due to have a transfusion.”
#9 Barbara Has MS And Sometimes Her Balance Issues Make Her Appear Drunk
“...I was a single parent I was diagnosed with progressive Multiple Sclerosis. To say it changed my life is possibly no understatement.”
#10 Having A Child With SMA Has Overtaken My Life
“Everyone deserves the right to live a full life and these bright, intelligent, people need a chance. This is the biggest genetic killer of children under two so these perfectly bright, able children, that just want to be children, are dying.”