Page 9 - Real Rochdale Issue 10 Summer 2021

Rachel Winnard:

One in Two Million

Rachel Winnard, from Rochdale, suffers from an extremely

rare and disabling medical condition which causes her body

to replace its muscles and connective tissues with bone:
Fibrodysplasia Ossificans Progressiva (FOP).

FOP is a very rare genetic disorder or mutation. flat shoes as her feet are frozen on tiptoe – but
It affects approximately 60-80 people across she refuses to allow her condition stop her
the UK – or one in two million – and the gene living life to the fullest.
responsible was only discovered 15 years ago.
Fiercely independent, after suffering a bad fall
An error in the body’s repair mechanism means followed by a flare, Rachel had to move in with
new bone is created in the wrong place. Simple her mum, before then moving into her own
bumps, bruises, and intra-muscular trauma, like bungalow in Rochdale – three days before
injections, can turn muscles, tendons and Christmas last year.
ligaments into bone. Rachel with her support dog, Mabel
“I thought I’d broken my pelvis, and I’ve never
When the body starts to generate new bone, a had pain in my shoulder like it before. I was in so
painful flare-up is usually experienced, which much agony,” Rachel recalls. The fall means “But I’ve not really minded lockdown because The UK’s only FOP charity, FOP Friends aims to
can be accompanied by tissue swelling, joint Rachel was left bedridden for months, leaving it wasn’t that different for me anyway. It’s been raise awareness of FOP to aid early diagnosis,
stiffness and serious discomfort. Episodes of her reliant on her mum, aunt and carers. quite nice going around Falinge Park in my which can help to prevent the often-
bone growth can also occur spontaneously. wheelchair as I’ve tried to get out as much as I devastating progression of the condition.
Since the fall, Rachel is only able to walk tiny can, and in December I got Mabel [Rachel’s Shih
There is no definitive treatment or cure doll-like steps, with some support as her Tzu dog]. We all take Mabel out for a walk and Helen Bedford-Gay, Communications and
available for patients with FOP. balance “isn’t great.” she runs next to my chair. She’s been the best Fundraising Manager, FOP Friends, who has
thing ever.” known Rachel for 12 years, added: “Rachel has
Rachel, 36, of Rochdale, was born with the “I can walk short distances around the house, been through some tough times with her FOP,
condition, but was not diagnosed until she was but I need to hold someone. I’m unable to go to Rachel has even become one of the first FOP but even when faced with challenges, she
12 years old. From the age of 18 months, the toilet on my own, or shower. patients to have the Covid-19 vaccine, despite somehow manages to adapt, get on with life,
doctors thought the lumps and bumps on her the associated risks. The risks associated with and do so with a laugh and a joke. She really is
back were benign tumours, diagnosing her with “The hardest thing about FOP is losing my the vaccine for people with FOP mean the an amazing source of strength and kindness
aggressive juvenile fibromatosis and treating mobility. I miss being able to dance and I’ve decision to take it must be assessed on a for those who are living with FOP and is always
her with chemotherapy and radiotherapy. always been quite a social person. I’m stubborn, case-by-case basis. happy to share her experience to help others.
but you need to be with a chronic illness. I want
When she was 12, doctors realised Rachel was to inspire others living with the condition, as “I want to go on holiday,” she laughs. “I love “FOP has a profound impact on the quality of
missing a bone in each of her big toes – a classic well as increase awareness. going abroad. I’d like to go on a cruise; life of the people it affects. We also work to
‘tell-tale’ sign of FOP – which led to her somewhere hot would be ideal. support people like Rachel, and their families,
diagnosis. The tumours weren’t disappearing, “It’s been hard not being able to see friends on their journey, through our small, yet special
but turning into bone, meaning Rachel was and go on a night out,” she continues, referring “My last holiday was when I saw my sister in community network.”
essentially growing a second skeleton. to the current pandemic. “My friend Lorna has Australia in 2019, but I don’t know if I could sit
been amazing though. It really makes my day on a plane now. When I went, I could still bend For more information about FOP, please visit:
The condition means that Rachel is becoming when she visits. We’ve been friends since we my leg, but coming back, I couldn’t. It was a bit www.fopfriends.com
trapped in her own body – she is unable to wear were 15.” of a nightmare.”

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