Mum with rare condition causing long limbs and hollow face has filler to ‘look normal’ after being called a ‘freak’

A young mum with a rare condition which causes long limbs, “deformed hands” and a hollow face has had filler injections to “look normal” after being called a “freak” in school.

Zoe Ridgway, a 32-year-old mum to Sofia, 12, from Aberdare, South Wales, was diagnosed with Marfan syndrome at the age of 12 after doctors initially suspected anorexia due to her “skinny and lanky” appearance.

As a teenager she grew unusually long limbs and her height soared to 6ft (1.83m), and was bullied for her looks at school which she believes severely impacted her mental health – resulting in multiple suicide attempts and depression in her teens.

Now, Zoe has 36-inch legs, nerve damage causing “deformed” hands, a 5ft 10in (1.78m) arm span, long fingers, crowded teeth, and a hollow face – and despite her height and span she has size six feet.

Along with everyone in her family, Zoe also has Ehlers-Danlos syndrome – a condition which causes flexible joints and stretchy and fragile skin, which, combined with Marfan syndrome, means she finds walking very difficult.

She often feels alone with her condition, but since aged 29 has used filler injections in her lips, jaw and cheekbones to improve her confidence and since posting about it on TikTok has found others with Marfan syndrome to connect with and draw comfort from.

Zoe, who does not work because of her disability, told PA Real Life: “Bullying had a massive impact on my mental health and with the way I thought I looked, people used to say I was a freak.

“I tried to take my own life as a teenager a few times because of my self-esteem and I struggled with my mental health big time – I definitely had depression.

“I try to change my face by having fillers because I can see I have Marfan syndrome and I don’t want other people to see it, I just wanted to look normal.

“I always tell my daughter she’s beautiful inside and out, and that she’s perfect, and I don’t want her to grow up wanting to change her face like I did.”

From the moment she was born, Zoe said her mother knew “there was something not right” with her.

She was often described as a “floppy baby” and was flat-footed – so, she had to wear a custom-made, lightweight brace to support her ankle and foot throughout childhood.

At the age of three, Zoe was diagnosed with Ehlers-Danlos Syndrome and as she entered her early teens, doctors became concerned about her weight, fearing she might have anorexia as she was “so skinny and lanky”.

Both her mum and dad’s side of the family have Ehlers-Danlos syndrome, and they believe they are one of the largest families in Europe to have it.

After years of tests, Zoe was diagnosed with mitral valve prolapse, a heart condition that occurs when the flaps of the mitral valve stretch or enlarge and bulge into the left atrium, and Marfan syndrome at the age of 12.

Because of her heart condition, Zoe has heart palpitations, fainting spells and has little energy.

“It was frightening more than anything,” said Zoe.

“I remember not being able to accept having Marfan because I’d already been diagnosed with something else.

“It was quite a shock – I’d always been a big reader so I researched a lot about it and could see I had the symptoms but when I told people I had it, no one knew what it was.”

As a teenager, she grew “very tall and quite lanky looking” with very long limbs, eventually reaching 6ft.

She said she was bullied at school for her appearance and remembers being thrown down stairs, having her head shoved in a bin, and being called names such as “freak” on her walk home.

This left her feeling extremely self-conscious then, and it continues to affect her.

Over time, her appearance has changed slightly.

She now has 36-inch long legs, which is considered extra tall in clothing brands such as River Island, along with nerve damage in her hands, which causes them to be “deformed”.

She also has size six feet, unusually small for someone of her height, and a 5ft 10in arm span.

Her fingers are long and slender, and she has crowded teeth, an underbite, and a hollow-looking face.

“People don’t realise but I’m still very self-conscious, especially about my hands and my limbs being long,” Zoe explained.

“It’s really hard because people don’t always think I have anything wrong with me, but I can see it, and it’s hard to explain to people.”

To “feel more confident”, at the age of 29, Zoe began having dermal fillers – gel-like substances – injected under the skin to create a fuller appearance to her face.

She has had them in her jaw to add volume, definition, and shape to the jawline and in her cheekbones to make them look plumper.

She has also had lip filler to “help hide her underbite”.

When she goes for check-ups at the cardiology clinic, she often sees others with Marfan syndrome, which helps her feel less alone.

She is the only person in her family to have the condition and is “very glad” her daughter does not, as there was a 50% chance she would.

Zoe said: “They (my family) understand my condition in terms of having joint problems but not how it affects my appearance and the impact it can have on your mental health.”

Since 2020, she has been posting about Marfan syndrome on TikTok under the handle @zoelr92 to help raise awareness and has found a community she can relate to – she now has more than 22,500 followers and her most popular video on the topic has more than 79,000 views.

She said: “I started posting in the February because it’s Marfan syndrome awareness month… I try to post relatable things for people with Marfans and teach people about it.

“I connect with quite a lot of people with Marfans on there actually, I connected with somebody yesterday from Africa, and that was really nice.

“A lot of people have messaged me saying thank you for raising awareness about it and people have said they think they have it because of my videos, then they’ve had a diagnosis.

“I find it really important to spread that awareness.”

Around two years ago Zoe started dating after splitting up with a partner and found it hard to tell people about her condition.

She said: “I found it really difficult to open up to people – I think dating was a big thing for me, trying to explain to people that I wasn’t well, and a lot of people just thought that I was making it up because I looked like there was nothing wrong with me.”

However, when she met her current partner, he was very supportive and day-to-day makes sure she is taking her medications.

She is currently taking beta blockers, strong painkillers, and supplements such as turmeric to help manage her pain.

She struggles to walk – though she has a wheelchair, Zoe says she’s “stubborn and tries not to use it”, even though her hips feel as though they have “dislocated” when walking.

Looking to the future, she hopes to continue raising awareness about her condition.

For mental health support, contact the Samaritans on 116 123, email them at [email protected], or visit samaritans.org.