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Victoria Graham: the US beauty queen raising awareness of invisible illnesses

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At the age of 13, Victoria Graham was diagnosed with Ehlers-Danlos Syndrome (EDS), an invisible illness that affects her connective tissues.

As the current Miss Frostburg, the US beauty queen is using her public profile to give more visibility to the realities of living with an invisible illness.

EDS is a rare genetic condition, affecting the skin, joints and blood-vessels. Graham has a severe form of EDS which gives her spinal and cranial instability, requiring regular medication and daily blood-thinning injections.

As the result of extensive surgeries, Graham has a 25-inch scar running down her back. Through her work on and off stage as a beauty queen, Graham is advocating more awareness of the condition.

Graham told the BBC, "It’s not always easy, sometimes you want to be normal - you don't want to be that girl with those scars on stage."

"Don't be ashamed to tell your story - it may inspire others" . . . Let me tell you, these little shots suck. Once a day, every day (twice a day at times) for almost 3 years. My stomach is bruised, branded with scar tissue. If I told you it gets easier, I'd be lying. My eyes tear, I cringe in pain every, single time. The thing about chronic illnesses, however, is that we must endure things we don't want to - sometimes physical pain, like a shot to treat blood clots, sometimes excluding ourselves from events we wish we could do - but none of it is voluntary. Having a chronic illness means putting our health above happiness. But, in the end, we will prevail stronger than ever. . . . #ButYouDontLookSick #MakingInvisibleIllnessesVisible #SpoonieStrength #ChronicIllness #InvisibleIllness #Spoonie #BloodClots #BloodThinners #lovenox #pageant #pageantgirl #blonde #EhlersDanlosSyndrome #POTS #Dysautonomia #Cardiology #Neurology #Hematology #DTC #builttodrive #DrivenToCure  #MissFrostburg #MissMaryland #MissA #MissAmerica #LiveYourPlatform #BeTheChange #ChangeTheWorld

A post shared by Victoria Graham (@victonation) on

Captioning her Instagram posts with #ButYouDontLookSick, Graham is using her platform to send an important message.

Between images of her smiling brightly wearing her beauty queen sash and crown on Instagram, Graham posts hospital pictures with honest captions detailing the constant pain and struggles caused by EDS.

EDS is often undiagnosed or misdiagnosed so the numbers of those living with the condition is uncertain. However the National Institute of Health (NIH) have estimated that EDS affects around 1 in 5,000 people worldwide.

No caption required.

A post shared by Victoria Graham (@victonation) on

Concerned by a shortage of education about EDS, as well as a worrying lack of available support for people living with EDS, Graham set up The Zebra Network last year.

On The Zebra Network’s website, there is a quotation by Professor Rodney Grahame: "No other disease in the history of modern medicine, has been neglected in such a way as Ehlers-Danlos Syndrome.”

In response to this, the text continues below: ‘"...until now." -Victoria Graham’.

Graham’s Instagram is filled with honesty, courage, and inspirational messages, raising awareness of EDS and providing support to others with invisible illnesses.

‘We get so worried about being “pretty”,’ Victoria Graham writes in the caption of an Instagram post. ‘Let’s be pretty kind, pretty funny, pretty smart, pretty strong.’

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