Saving a life — one tweet at a time
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Cristina Di Corte remembers the day she found out she had mitochondrial neurogastrointestinal encephalopathy — it was the same day she learned that a bone marrow transplant could save her life. It was also the beginning of an ambitious coast-to-coast social media campaign to find a donor match.
“It was really scary to finally find out what I have,” says the 22-year-old Mississauga native of that day last November.
If you’ve never heard of the disease, also known by its acronym MNGIE, you’re not alone. The genetic condition has only ever been diagnosed in 70 people worldwide and is so rare that most doctors have never heard of it.
Di Corte first started noticing symptoms when she was 17, but it would be four years before she was accurately diagnosed. The condition affects the muscles that move material through the digestive system, so much of what Di Corte ate would sit in her system and rot. A hairdresser at Erin Mills Town Centre, she became so exhausted that she was unable to work.
“I was nauseous, throwing up, and had horrible stomach pains,” says Di Corte. Already a naturally slim woman at 98 pounds, her weight dropped to as low as 68 pounds. A series of doctors and specialists misdiagnosed her with irritable bowel syndrome, tested her for celiac disease and colon cancer, and even sent her to a clinic for people with eating disorders.
To finally be able to name the disease was little comfort though, as it came with the news that she would need a bone marrow transplant.
“I basically need it as soon as possible,” says Di Corte, who now receives nutrients through a central catheter line and is back up to 80 pounds. Unfortunately, her mother, father and brother are not matches. Di Corte is registered with OneMatch.ca, a stem cell and marrow donor network, but they warned her that the list is long.
That’s when her older brother had an idea. “He was like, why don’t we put this on Facebook?” says Di Corte.
A Facebook event asked friends and family to tweet #hopeforcristina on Twitter every Wednesday at 6 p.m., and the call has been a trending topic in Canada three times. She also has her own website, Helpingcristina.org, and it wasn’t long before Di Corte was telling her story on Citytv.
“I think if more young people knew about OneMatch and how easy it is to be tested, they would register,” says Di Corte. “You could save someone’s life.”
All that’s required to register with Canada’s stem cell and marrow network is a simple, non-invasive cheek swab — and you don’t even need to see a doctor to do it.
Individuals can go to OneMatch.ca and order a free swab kit. A YouTube video explains how to take the swab and then the samples are simply popped back in the mail, postage paid.