Page 8 - 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.
It affects approximately 60-80 people across
the UK – or one in two million – and the gene
responsible was only discovered 15 years ago.
An error in the body’s repair mechanism means
new bone is created in the wrong place. Simple
bumps, bruises, and intra-muscular trauma, like
injections, can turn muscles, tendons and
ligaments into bone.
When the body starts to generate new bone, a
painful flare-up is usually experienced, which
can be accompanied by tissue swelling, joint
stiffness and serious discomfort. Episodes of
bone growth can also occur spontaneously.
There is no definitive treatment or cure
available for patients with FOP.
Rachel, 36, of Rochdale, was born with the
condition, but was not diagnosed until she was
12 years old. From the age of 18 months,
doctors thought the lumps and bumps on her
back were benign tumours, diagnosing her with
aggressive juvenile fibromatosis and treating
her with chemotherapy and radiotherapy.
When she was 12, doctors realised Rachel was
missing a bone in each of her big toes – a classic
‘tell-tale’ sign of FOP – which led to her
diagnosis. The tumours weren’t disappearing,
but turning into bone, meaning Rachel was
essentially growing a second skeleton.
The condition means that Rachel is becoming
trapped in her own body – she is unable to wear
REAL ROCHDALE - SUMMER 2021
flat shoes as her feet are frozen on tiptoe – but
she refuses to allow her condition stop her
living life to the fullest.
Fiercely independent, after suffering a bad fall
followed by a flare, Rachel had to move in with
her mum, before then moving into her own
bungalow in Rochdale – three days before
Christmas last year.
“I thought I’d broken my pelvis, and I’ve never
had pain in my shoulder like it before. I was in so
much agony,” Rachel recalls. The fall means
Rachel was left bedridden for months, leaving
her reliant on her mum, aunt and carers.
Since the fall, Rachel is only able to walk tiny
doll-like steps, with some support as her
balance “isn’t great.”
“I can walk short distances around the house,
but I need to hold someone. I’m unable to go to
the toilet on my own, or shower.
“The hardest thing about FOP is losing my
mobility. I miss being able to dance and I’ve
always been quite a social person. I’m stubborn,
but you need to be with a chronic illness. I want
to inspire others living with the condition, as
well as increase awareness.
“It’s been hard not being able to see friends
and go on a night out,” she continues, referring
to the current pandemic. “My friend Lorna has
been amazing though. It really makes my day
when she visits. We’ve been friends since we
were 15.”
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“But I’ve not really minded lockdown because
it wasn’t that different for me anyway. It’s been
quite nice going around Falinge Park in my
wheelchair as I’ve tried to get out as much as I
can, and in December I got Mabel [Rachel’s Shih
Tzu dog]. We all take Mabel out for a walk and
she runs next to my chair. She’s been the best
thing ever.”
Rachel has even become one of the first FOP
patients to have the Covid-19 vaccine, despite
the associated risks. The risks associated with
the vaccine for people with FOP mean the
decision to take it must be assessed on a
case-by-case basis.
“I want to go on holiday,” she laughs. “I love
going abroad. I’d like to go on a cruise;
somewhere hot would be ideal.
“My last holiday was when I saw my sister in
Australia in 2019, but I don’t know if I could sit
on a plane now. When I went, I could still bend
my leg, but coming back, I couldn’t. It was a bit
of a nightmare.”
Rachel with her support dog, Mabel
The UK’s only FOP charity, FOP Friends aims to
raise awareness of FOP to aid early diagnosis,
which can help to prevent the often-
devastating progression of the condition.
Helen Bedford-Gay, Communications and
Fundraising Manager, FOP Friends, who has
known Rachel for 12 years, added: “Rachel has
been through some tough times with her FOP,
but even when faced with challenges, she
somehow manages to adapt, get on with life,
and do so with a laugh and a joke. She really is
an amazing source of strength and kindness
for those who are living with FOP and is always
happy to share her experience to help others.
“FOP has a profound impact on the quality of
life of the people it affects. We also work to
support people like Rachel, and their families,
on their journey, through our small, yet special
community network.”
For more information about FOP, please visit:
www.fopfriends.com
REAL ROCHDALE - SUMMER 2021