This Alberta Woman Was Cured Of Sickle Cell Disease & You Could Help Others Like Her
It all starts with a super simple test.
Each year, hundreds of Canadians, like Revée Agyepong, are in need of a stem cell transplant to save their lives.
Stem cells, specifically blood stem cells, develop into red and white blood cells and platelets — all of which are essential for the body and immune system to function properly.
In fact, they're so vital that stem cell transplants can treat over 80 diseases and disorders, including life-threatening ones like leukemia, aplastic anemia and sickle cell disease.
For Revée, 30, a Ghanian-Canadian diagnosed with sickle cell disease, the transplant was literally lifesaving.
"My journey with sickle cells was tough, to say the least," Revée told Narcity in an interview.
Sickle cell disease is an inherited blood disorder that causes red blood cells to be distorted into "a sickle," or crescent shape.
These misshapen cells can cause all sorts of problems for patients including anemia, painful blockages in the circulatory system, vision problems and frequent infections.
The disease affects one in every 2,500 babies born in Canada and is most common in families of African descent.
Living With Sickle Cell Disease
Born and raised in Alberta, Revée was diagnosed with the condition at the age of 2.
Growing up, Revée experienced everything from crippling pain to repeated pulmonary embolism scares that left her "unable to breathe.”
To treat her condition, she underwent red cell exchanges, a type of high-powered blood transfusion, every seven weeks for approximately seven years.
"Every time I went to the doctor, it felt like there was a new part of my body breaking down," she said, adding that the symptoms were all she'd ever known.
"I genuinely thought that everyone else was experiencing that same burning chest pain and gasping for air after coming in from recess."
It wasn't until she did her own research at 12 years old that Revée discovered the severity of her diagnosis.
She recalls being devastated after reading that kids with sickle cell disease rarely live past 14 years old.
Thankfully, she proved those statistics wrong. With the support of her family, Revée was able to take advantage of a lifesaving opportunity.
Finding The Perfect Stem Cell Donor
After exhausting all the available treatments for sickle cell disease, Revée felt depleted, and her family knew it was time to search for other options. That's when they discovered that a stem cell transplant could be an option.
Then in her mid-20s, Revée was told that the procedure was only being offered in pediatric patients. With persistence and advocacy from her family, Revée's doctor introduced her to the adult bone marrow transplant team. But first, she needed to find a stem cell match.
According to Canadian Blood Services Stem Cell Registry, less than 25% of patients are successfully matched with someone in their own family. Revée, luckily, was one of them.
On November 9, 2017, Revée became one of the first adults in Canada to be cured of sickle cell anemia through a stem cell transplant. Her sister is to thank for the lifesaving donation.
"I’ve always been close with both of my siblings, but I think after the transplant it really became stronger because there’s a type of bond that forms in knowing someone so selflessly donated such a generous, life-changing gift," Revée told Narcity.
Life After A Stem Cell Transplant
Revée's stem cell transplant was not only lifesaving, but life changing.
Afraid to dream too far into the future as a child, Revée now exercises, hikes mountains and attends swimming lessons — all of which she was unable to do before.
"Since my stem cell transplant, I’ve been able to live a limitless life and truly dream," she said.
Most importantly, Revée uses her story and platform to advocate for others and raise awareness about sickle cell disease and stem cell transplants.
"It’s so hard to put into words because you feel so blessed to be the first, but you also feel this great responsibility to ensure the rest of your comrades make it through," she said.
"I think that is honestly how I became an advocate. God didn’t make me the first by accident, it was for a reason."
How You Can Help People Like Revée
Revée was one of the lucky few patients to find a matching donor within their own family. Meanwhile, the majority of patients in need of a stem cell transplant must rely on an unrelated volunteer donor to help save their life.
The search is harder still for patients from Indigenous, Asian, South Asian, Hispanic, mixed-race and diverse Black communities, who are much more likely to match with someone who shares their ethnicity.
Though there are over 400,000 people registered with Canadian Blood Services Stem Cell Registry, only 33% of potential donors come from Indigenous, Asian, South Asian, Hispanic, mixed-race and diverse Black communities.
Had Revée not received a donation from her sister, she would have put her hopes in finding an unrelated donor match who is also Black — a group that makes up only 1.5% of potential donors on the registry.
You can help people like Revée by joining Canadian Blood Services Stem Cell Registry and increasing the chance for all patients in need of a lifesaving match.
If you’re healthy and between the ages of 17-35, you can see if you’re eligible to join the registry by completing the Canadian Blood Services' registration questionnaire.
After that, you’ll receive a quick at-home testing kit from Canadian Blood Services. You’ll need to swab the inside of your cheeks for DNA and send back the sample in the pre-paid envelope provided.
When your information is received and accepted, you’ll be added to the registry. Potential donors are matched to patients using DNA markers called human leukocyte antigens (HLA). Once you’re in the database, doctors will be able to see if you’re a match for any patient in need within Canada or around the world.
It could be weeks or even years before you’re called upon to make a donation, but if you're a match, you could save someone's life. And Canadian Blood Services will be there with you throughout the entire stem cell donation process.
"That little test someone takes can be the difference between someone living a limited life or a limitless life — someone living or dying in other circumstances," Revée told Narcity.
"So I urge people to do something selfless and share the gift they’ve been given."
To learn more about how you can make an impact, visit Canadian Blood Services Stem Cell Registry's website. You can also follow Canadian Blood Services on Instagram, Facebook, Twitter and YouTube.
This interview has been condensed and edited for clarity.
The information in this article is not intended and should not be construed as medical advice. Consult your health care provider before making any health care decisions or for guidance about a specific medical condition.