The Woman Who's Turning To Stone

RACHEL Winnard, 37, from Rochdale, UK suffers from Fibrodysplasia Ossificans Progressiva (FOP) - a condition that causes the development of bone in areas of the body where bone is not normally present. The first signs of her condition appeared when she was 19 months old when her parents noticed a lump on her neck. Rachel had similar incidents for many years, including when she was nine years old, and banged the back of her neck, causing the bumps to flare up again. She wasn’t diagnosed with FOP until she was 12 years old when a doctor noticed that she was missing a bone in her big toe, a common sign of the condition. Rachel told Truly: “I am growing a second skeleton. It’s very rare, there are only roughly 800 cases in the whole world with it.” She explained how her condition affects her, “a flare-up normally means you get lumps on the body. There's a lot of swelling, redness really, it’s really painful.” She first lost movement in her right arm in childhood but was able to live a relatively normal life as a teenager. However, in her 20s she had a flare-up in her right hip and began having to use a crutch to walk. Since then, she has lost all her mobility, and must use a wheelchair. She lives on her own, but has her aunt and mum looking after her as full-time carers. “I used to be quite independent, so it has been quite a struggle to have to rely on others to do things," she said. “It's been really hard.” Despite this, Rachel remains positive and wants to raise awareness of the condition in the hopes of getting a cure for sufferers. Her family and friends use humour as a way to cope with the darker times. “My message to others would be to just try and enjoy life. I am in a wheelchair, but I still go out and do things, I can still have a laugh with my friends, nothing's changed in that way.”
To donate to find a treatment and a cure for FOP visit - Fopfriends.com