Victoria Graham is an American student (almost) like any other. Recently, this pretty 22-year-old – from the state of Maryland – was crowned Miss Frostburg in a beauty pageant. Except that Victoria has an invisible peculiarity: she suffers from Ehlers-Danlos syndrome, a rare genetic disease affecting approximately 1 in 5,000 people worldwide.
This disabling pathology which affects connective tissues is characterized by fragile, hemorrhagic and stretchable skin, and by joint hyper-mobility. The patients suffer from pain, great fatigue, disturbances in the perception of the body and the control of movements, hearing problems and visuals …
10 operations in two years
The young American realized that something was wrong at the age of 10, when her coach in gymnastic pointed out to him his hyper-flexibility. For 3 years, Victoria and her family met with specialists to get a diagnosis – without success. Finally, it was at the age of 13 that a specialist in genetics put a name to his disease: Ehlers-Danlos syndrome. “My grandmother had lived with it for 70 years, and my mother had it for 40 years: it’s a kind of family inheritance” laughs the young woman, questioned by our colleagues from the BBC.
Between 2014 and 2016, Victoria underwent 10 surgeries. “I had to take 20 to 25 drugs every two hours. My joint hyper-mobility posed a danger for my brain and for my blood circulation. “Result: today, the young woman presents a long scar 63.5 cm long from her spine … which she decided to take on.
“I take the stage to say, ‘Hey, I have an invisible disease’, to show others that they are not alone in their battles. It is surmountable, I do not want to be a source of inspiration; my goal is to prove to people that if I can do it, so can they. »At 22, she is also the creator of the network Zebra Network, dedicated to people who suffer from Ehlers-Danlos syndrome.
