A woman with a rare condition suffered by only two million people worldwide has told of her daily struggle to carry out routine activities most people take for granted. Rachel Winnard has fibrodysplasia ossificans progressiva (FOP), which causes the body’s soft tissues to gradually turn to bone.
The 37-year-old, from Rochdale in Greater Manchester, o has seen her condition worsen over the years. She now uses an electric wheelchair, can no longer leave the house without her commode or nappies as she needs support to go to the toilet, the Manchester Evening News reports.
Rachel was wrongly diagnosed in her early years when her body formed benign lumps initially thought to be fibromatosis. She was treated with chemotherapy and radiotherapy aged 18 months. Another lump formed when she bumped her back on a garden swing aged nine, and she received a a year of further treatment. But when more lumps formed on her chest, the treatment stopped as medics warned it might stunt her growth.
Aged 12, she saw a doctor who noticed her big toe was shorter than the rest, and diagnosed her with FOP. There is no cure or treatment available on the NHS, but Rachel's mother had seen a documentary on the condition and reached out to an expert in the US, Dr Frederick Kaplan, taking her daughter to meet him at a conference in Bath.
Rachel told the MEN: "I never really let it get in my way or let it bother me as such. I was still going out with my friends and still doing what I wanted to do. My parents treated me as normal and let me get on with it - they didn’t wrap me in bubble wrap and I’m so grateful because some of the things I did then, I can’t do now.”
She married aged 25, although the couple split in 2020, and worked in a nursery and as a childminder. Her condition worsened in her late twenties, and she begun using a crutch to walk. She said: "My ex-partner Paul didn’t treat me any differently. I was independent. And I am such an independent person, I don’t like people treating me differently."
The condition worsened further, with her limbs locking into place, leaving her struggling with mobility and reliant on full-time carers. Her mum, 58, and her auntie, 53, take it in turns to look after her during the day, while she has two other carers help her out: one at night and in the morning, and the other at teatime - who she knows as friends.
Following an assessment in February by Rochdale Borough Council social services, Rachel was awarded three more hours of care, making it up to 64 hours of paid care a week. At the time, she felt like she couldn't contest it to try and obtain more hours and says it's a "stressful" process, however she argues it is not enough and says her family have to work longer hours than what they are paid.
Rochdale Borough Council has said they are open to discussions with Rachel to ensure she has the adequate care she needs. Rachel said: “64 hours a week is nothing. It’s so bad and makes me so mad. If I didn’t have my mum and Leanne [her auntie], where would I be? They’d [the council] have to do something. I can’t be alone, they can’t just leave me. I do worry about my mum getting older, I don’t know what would happen."
She added: “If I’m going out, I will go in my wheelchair, which has given me so much freedom, but then I have the toilet situation when I’m out. I can’t sit on a normal toilet so I have to take my commode, but if I’m desperate, then I have nappies with me because it’s just easier that way. It’s been hard trying to adjust to it.
"I like going out with friends at weekends but I don’t really do that anymore. I have got really good friends that will help if I want to go out with them and then I have to take nappies on a night out. They don’t mind helping me."
Rachel said it has been difficult adjusting to her new way of life. She explained: "Even trying to find places to get in with the chair... I have to go on the road sometimes if there is not a dropped curb. There are a million and one things I have to think of now that you don’t realise when you’re not a wheelchair user."
While Rachel’s condition is incredibly rare, her parents set up an FOP meet-up in Manchester 10 years ago for other people around the world with the condition to meet in one place. Charity FOP Friends has been arranging them every two years since, while Rachel has also met friends with the same condition via Facebook.
FOP was recently debated in Parliament after a petition to dedicate funding for research into FOP gained more than 100,000 signatures. The charity's fundraising has helped ongoing drug trials - which they hope will eventually be able to help patient flare-ups, making it harder for limbs to lock.
Rachel said: "It’s so rare, this is the problem, there aren’t enough people for the NHS to afford the trials. It is frustrating that they push us to the back like we don’t matter, but hopefully now we’re getting somewhere. It’s taken long enough."
Rachel is determined to maintain some of her independence despite the debilitating nature of FOP. She has just returned from a holiday in Scotland and is looking into whether she can find the right airline to be able to fly comfortably abroad for a holiday.
"I enjoy being single and I'm not interested in dating," she said. "I see my friends, not as much as I used to, but I like getting out and seeing people. I still have a laugh."
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