'I had work done on my face because of my condition - people think I'm making it up'

A young mum with a rare condition which causes long limbs and a hollow face among other symptoms has had filler injections to “look normal” after being bullied in school.

Zoe Ridgway, a 32-year-old mum to Sofia, 12, from Aberdare, South Wales, was diagnosed with Marfan syndrome aged 12 after doctors initially suspected anorexia due to her appearance.

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

Read more: Scientists find doing activity for one hour a day could add years to your life

Now aged 32, Zoe says she has 36-inch legs, nerve damage causing “deformed” hands, a 5ft 10in (1.78m) arm span, long fingers, crowded teeth, and a hollow face. But despite her height and span she wears an average size six shoe.

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

She has often felt alone with her condition, but for the last few years has had filler injections in her lips, jaw and cheekbones to improve her confidence. Since posting about her experience on TikTok, Zoe 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.

How to access support if you need it

If this piece has affected you and you want to talk to someone, there are helplines and support groups available, many of them 24/7.

The NHS Choices website lists the following helplines and support networks for people to talk to.

• Samaritans (116 123 in UK and Ireland) operates a 24-hour service available every day of the year. If you prefer to write down how you're feeling, or if you're worried about being overheard on the phone, you can email Samaritans at jo@samaritans.org. Anyone can contact Samaritans FREE any time from any phone on 116 123, even a mobile without credit. This number won’t show up on your phone bill.
• Childline (0800 1111) runs a helpline for children and young people in the UK. Calls are free and the number won't show up on your phone bill.
• PAPYRUS (0800 068 41 41) is a voluntary organisation supporting teenagers and young adults who are feeling suicidal.
• Mind (0300 123 3393) is a charity based in England providing advice and support to empower anyone experiencing a mental health problem. They campaign to improve services, raise awareness and promote understanding.
• Students Against Depression is a website for students who are depressed, have a low mood or are having suicidal thoughts.
• Bullying UK is a website for both children and adults affected by bullying.

“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.”

Zoe said her mother knew “there was something not right” with her from the day she was born.

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

Zoe was diagnosed with Ehlers-Danlos Syndrome aged three and as she entered her early teens, doctors became concerned about her weight. They feared 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 the condition.

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 experiences heart palpitations, fainting spells and has little energy.

She said: “It was frightening more than anything.

“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.”

When she became a teen, she grew very long limbs, eventually reaching 6ft.

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

This left Zoe feeling extremely self-conscious then, which continues to affect her now.

Over time, her appearance has changed.

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”.

But despite her height and limb span, Zoe has very average size six feet.

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

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

“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.”

Zoe began having dermal fillers to “feel more confident” at the age of 29 to create a fuller appearance to her face.

Since then she has had filler 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 she 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 helps to make sure she takes her medications.

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

Zoe struggles with walking, and despite having a wheelchair she is “stubborn and tries not to use it”, even though her hips sometimes 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 jo@samaritans.org, or visit samaritans.org.