The US beauty queen making her invisible illness visible

“It’s not easy to stand on stage in a bikini in pageants. I have a 25-inch scar that runs down my spine. And people can see it… like, really see it.”

By Kelly-Leigh Cooper, BBC News 27 March 2017

Victoria Graham, a 22-year-old student from Manchester in the US state of Maryland, had an untraditional journey into the glitzy world of US beauty pageants.

She may look like any other contestant at first glance, but Victoria suffers from Ehlers-Danlos Syndrome (EDS) – a rare genetic condition that affects her connective tissues.

Recalling her first competition, she says: “I walked into orientation in a neck-brace, surrounded by all of these gorgeous sky-tall women.

“I looked to my Dad and asked ‘What in the world am I doing here?’… It was comical.”

Victoria wasn’t always so open about her condition. “Until I left school at 19, I hid my illness from others,” she says.

“I would rather have my legs dislocate than someone see me in a knee brace.”

But she’s since realised that speaking out makes her feel empowered – and enables her to help others in the same situation.

‘My injuries weren’t normal’

Victoria grew up practising gymnastics and was told she was “too flexible” by her coaches.
She became aware something was really wrong after a gymnastics accident when she was 10.

“I’d get injuries that weren’t normal – things weren’t adding up,” she says.

EDS is notoriously difficult to diagnose, and she spent three years seeing different specialists, trying to pin down the problem.

Eventually her family found a geneticist who gave her a diagnosis aged 13.

“It was weird because although there’s no treatment and no cure, we were ecstatic because we finally had a name for what was going on,” she says.

In the family

It then became apparent that Victoria’s condition was inherited – only then did her mother, brother and other family members find out they also had lesser forms of EDS.

“My grandmother lived with EDS for nearly 70 years without knowing and my Mom had it 40 years.

“Nobody should have to live that long before finding out what’s going on with them,” she says.

Over a two-year period from 2014, Victoria had to undergo 10 operations on her brain and spine.

“I’m fused from skull to my bum – all the way down,” she says. “Because I was able to move so much before, the vertebrae were dislocating themselves.

“I have a limited range of motion now, but I need to be stiff so my brain stem isn’t under pressure and my spinal cord isn’t being crushed.”

What is Ehlers-Danlos Syndrome?

• Ehlers-Danlos syndrome (EDS) is the name for a group of rare inherited conditions that affect connective tissue
• Connective tissues act like a ‘glue’ to support the skin, tendons, ligaments, blood vessels, internal organs and bones
• Victoria suffers from a severe form of EDS which means she has from cranial and spinal instability
• She also lives with dietary limitations because of how her condition affects her internal organs
• For more information go visit the Ehlers-Danlos Society website

Victoria’s EDS affects a lot of aspects of her body, including blood flow.

She says she has to take 20-25 tablets every two hours. Some are for pain relief, but others are supplements to ensure her body keeps functioning correctly.

“I know plenty of girls who are in a near similar situation as me medically who are bed-bound, but I believe lifestyle has a lot to do with your attitude and how you view your situation.”

Despite the severity of her condition, Victoria finds herself often dismissed and discriminated against because of the invisible nature of her illness.

At school she consistently struggled with teachers’ unwillingness to make accommodations. And she says she often gets shouted at in public for using a disability parking pass.

As part of her efforts to raise awareness and educate people, Victoria now performs a monologue about her condition at pageant competitions.

She says she entered her first competition as part of a ‘bucket list’ deal with a friend after an operation.

She won her first local title just months later and now holds Miss Frostburg – a local title within the Miss America Organization.

Through this platform she has been able to meet and support young EDS sufferers.

“Its not always easy, sometimes you want to be normal – you don’t want to be that girl with those scars on stage,” she says.

Medical Zebra

Despite being only 22, Victoria now runs her own non-profit EDS support group called The Zebra Network.

“I was seeing people who were struggling – doctors were often recommended through word of mouth.

“I saw a dire need for a network of sufferers and for someone to dedicate their life to that” she says.

“I know I’m young and its a bold decision to make without a college degree – but if someone else wasn’t doing it, I would be that someone.”

She explains the network’s name: “In medical school, doctors are trained to think of the common thing when diagnosing through the phrase, ‘When you hear hoofbeats, think of horses not zebras’.

“So if a kid has runny nose or a cough they most likely have a cold rather than a rare form of cancer. But those rare things do happen and are often called ‘medical zebras’.

“So we say, ‘Think zebras, because zebras do exist’.”

Despite her confidence now, its been a fraught journey to this point for Victoria.

At Eastern University in Philadelphia, she was on the soccer and lacrosse teams, but was forced to move colleges to a more flexible programme because of her operations.

She says she also lost friends as she went through so many procedures.

“Maybe my illness is something they can’t deal with or put up with,” she says. “I don’t know what the reason is.”

She also describes having relationships with boyfriends suffer.

“I try to be very understanding and not take it personally,” she says.

“You have to think of the other side of things. I think that’s one of the ways I’ve been able to combat the negativity.

“If people are able to be empathetic to my situation in the same way — by recognising some illnesses aren’t as obvious as others – it would make it a lot easier.”

Source BBC News

Also see
Beauty queen competes to raise awareness for invisible illnesses Babble
Student who needed EIGHT operations to stop her brain ‘falling through her skull’ is now hoping to be crowned Miss America The Daily Mail