Woman’s childhood bumps were early signs of rare condition ‘turning her body to bone’

A brave woman has to wear nappies on nights out due to a rare bone disease which has locked parts of her body together.

Rachel Winnard, 37, can no longer leave the house without her commode or nappies as she is not able to go to the toilet without help.

She is one of up to just 80 people in the UK with fibrodysplasia ossificans progressiva (FOP) which is so rare that the medical trials lack funding.

Some of Rachel’s limbs have been locked into place meaning she struggles with mobility and relies on full-time carers to help with everyday tasks at her home in Rochdale, Greater Manchester.

The former nursery worker also uses an electric wheelchair and relies on nappies and the help of friends if she needs to use the toilet on nights out.

“I can’t sit on a normal toilet so I have to take my commode,” she told Manchester Evening News.

“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 was left misdiagnosed for years after benign lumps starting to form on her body during childhood.

She was treated with chemotherapy and radiotherapy at 18 months old and again aged nine after she bumped her back on a garden swing causing another growth form.

But when more lumps formed on the youngster’s chest, her parents were warned the treatment might stunt her growth and she was taken off it.

After her 12th birthday, Rachel saw a doctor who diagnosed her with FOP after examining her toes.

Her big toe is shorter than the others due to the condition which causes the body’s soft tissues to gradually turn to bone.

This is sped up through trauma to the body such as knocks and bumps.

While there is no treatment or cure available via the NHS, Rachel’s mum has reached out to Dr Frederick Kaplan in America who specialised in the condition.

She sought more information from the expert, and travelled with her daughter to see him at a UK conference in Bath.

Despite her diagnosis, Rachel did not let it take over her life as a teenager.

“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.”

Rachel had to stop horse riding as it was too dangerous, and relies on her wheelchair more than before.

After marrying at the age of 25, her condition worsened and she separated from her husband during the 2020 lockdown.

“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.”

Three years ago, her condition took a turn for the worse and now she can no longer be left alone.

Rachel moved into her parents’ home during lockdown and shielded as a vulnerable person against coronavirus.

She later moved into her own bungalow last December and found two carers to look after her at teatime and at night.

Meanwhile her mum, 58, and auntie Leanne, 53, take it in turns to look after her during the day.

In February, Rachel was awarded three more hours of care totalling 64 hours of paid care a week after an assessment by Rochdale Borough Council.

But she argues it is not enough and said her family still have to work longer hours than what they are paid.

“Sixty-four hours a week is nothing. It’s so bad and makes me so mad,” she said.

“If I didn’t have my mum and Leanne, where would I be?” she said.

Every day, carers give Rachel pain relief tablets in bed putting them in her mouth for her. Her eyes are wiped and she will be helped out of bed.

She is also helped at mealtimes, when using the toilet and bathing.

Rachel said it has been difficult to adjust to her new way of life, struggling to access venues or even use the pavement in her chair.

Her parents set up an FOP meet-up in Manchester 10 years ago for those with the condition to meet from around the world.

Charity FOP Friends has been arranging reunions every two years since, while Rachel has also met friends with the same condition via Facebook.

The bone disease was recently debated in Parliament after a petition to dedicate funding for research gained more than 100,000 signatures.

Fundraising by the charity has helped support ongoing drug trials which they hope will eventually be able to help patient flare-ups, making it harder for limbs to lock.

Rachel recently came across Kailo patches which use electrical signals in your body instead of drugs.

She is now weaning herself off morphine patches and pain relief tablets.

“It’s so rare, this is the problem, there aren’t enough people for the NHS to afford the trials,” she said.

“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.

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