A YOUNG mum with a rare condition causing long limbs and “deformed hands” tried to end her own life as teen 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.
As 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 in her teens.
Now, Zoe has 36-inch long legs and a a 5ft 10in (1.78m) arm span – but despite her height she has size six feet.
She says her condition has also left her with nerve damage resulting “deformed” hands, as well as long fingers, crowded teeth, and a hollow face.
Along with everyone in her family, Zoe also has Ehlers-Danlos syndrome – a condition that causes flexible joints and stretchy and fragile skin.
Combined with Marfan syndrome, it means Zoe finds walking very difficult.
The mum started having filler injections in her lips, jaw and cheekbones to boost her confidence.
Zoe, who does not work because of her disability, said: “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 brace to support her ankles and feet throughout childhood.
At the age of three, Zoe was diagnosed with Ehlers-Danlos Syndrome – a group of rare inherited conditions that affect connective tissue in the body that support the skin, tendons, ligaments, blood vessels, internal organs and bones.
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.
As Zoe she entered her early teens, doctors became concerned about her weight, fearing she might have anorexia as she was “so skinny and lanky”.
After years of tests, she 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.
Marfan syndrome is a disorder of the body's connective tissues, which maintain the structure of the body and support internal organs and other tissues.
It’s hereditary, which means it can be passed to a child from a parent who’s affected.
In around three in four cases, Marfan syndrome is inherited from a parent.
Some people are only mildly affected by Marfan syndrome, while others develop more serious symptoms.
Typical characteristics of Marfan syndrome include:
If your child is particularly slim or tall for their age, it does not necessarily mean they have Marfan syndrome.
It’s a rare syndrome, and your child will usually have a number of other symptoms if they have it.
Other physical characteristics of Marfan syndrome can include:
Diagnosing Marfan syndrome can be difficult as the symptoms can vary significantly from person to person.
As the symptoms of Marfan syndrome do not always develop during childhood, it may not be identified until the teenage years.
In most cases, a diagnosis of Marfan syndrome is based on a thorough physical examination and a detailed assessment of a person’s medical and family history.
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.
“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 injected under the skin to give her face a fuller appearance.
She has had them in her jaw and cheekbones, as well as her lips 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 per cent chance she would.
Zoe said: “[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 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 Marfan 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.
EVERY 90 minutes in the UK a life is lost to suicide
It doesn’t discriminate, touching the lives of people in every corner of society – from the homeless and unemployed to builders and doctors, reality stars and footballers.
It’s the biggest killer of people under the age of 35, more deadly than cancer and car crashes.
And men are three times more likely to take their own life than women.
Yet it’s rarely spoken of, a taboo that threatens to continue its deadly rampage unless we all stop and take notice, now.
That is why The Sun launched the You’re Not Alone campaign.
The aim is that by sharing practical advice, raising awareness and breaking down the barriers people face when talking about their mental health, we can all do our bit to help save lives.
Let’s all vow to ask for help when we need it, and listen out for others… You’re Not Alone.
If you, or anyone you know, needs help dealing with mental health problems, the following organisations provide support:
“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 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.
