Grace Ndayizeye spent most of her sophomore year of high school in the hospital.
“I was in the hospital every week because of pain crisis,” said the 18-year-old Lewis and Clark senior.
Ndayizeye has sickle cell anemia, a hereditary disease in which a mutated form of hemoglobin causes red blood cells to become stiff instead of flexible, and form a sickle or a crescent. Those hard, sickle-shaped cells can get stuck in small blood vessels and slow or totally block blood flow, blocking oxygen from parts of the body. This causes the intense pain that has sent her to the hospital so many times.
“It’s like a huge charley horse that doesn’t relax,” she said. “The pain comes in waves. Mine starts in my chest and then goes all over.”
In the United States, sickle cell disease affects 70,000 to 100,000 people. It’s most common among African-Americans and Hispanics, according to the National Heart Blood and Lung Institute, but is also found in other ethnic and racial groups.
The only known cure for the disease is a bone marrow transplant. However, finding a marrow match is difficult.
“African-Americans are severely unrepresented on the bone marrow registry,” said Tesia Hummer, marketing and communications specialist at Inland Northwest Blood Center.
To spread the word about the need, and to demonstrate how easy it is to register, INBC is hosting a free showing of the movie “Mixed Match” at the Garland Theater on Saturday.
The film is told from the perspective of mixed-race blood cancer patients who reflect on their multiracial identities and complex genetics as they struggle with a seemingly impossible search to find bone marrow donors. The movie also explores the role race plays in medicine.
Attendees will be able to register on the National Bone Marrow Registry prior to the screening. The event is sponsored by a grant from the Blood Center Foundation of the Inland Northwest.
Ndayizeye will be at the Garland to speak briefly about her journey.
Her days of multiple hospitalizations seem to be behind her now, thanks to monthly blood exchanges. Every four weeks, eight units of her blood are removed and replaced with eight units of new blood, untainted by sickle cell.
“I feel like a normal kid again afterwards,” said Ndayizeye. “Before I started blood exchanges I was on morphine, a lot.”
But the disease has already left its mark. She’s had her gall bladder removed and suffered two silent strokes – discovered by her yearly MRIs.
Scars along her arms show the evidence of repeated blood draws.
“I’m a hard poke,” she said.
Two ports implanted in her chest have made her monthly blood exchanges much easier. She still takes multiple medications and supplements, and uses an inhaler due to asthma caused by lack of blood flow in her lungs.
Ndayizeye prefers to focus on the positive.
“I don’t think about the downside much anymore.”
Yet, there were times in the not so distant past when she didn’t know if she’d live to fight another day. The resulting depression had lingering consequences.
“I can remember thinking this is it – I think it’s going to be over, today.”
Her best chance at living a healthy, normal life lies in finding a bone marrow match, so she can receive a transplant. They’ve been searching for a match for the past year and a half.
She’s hoping for a large crowd at Saturday’s screening of “Mixed Match,” and that many people will take a few minutes to sign up for the National Bone Marrow Registry.
Tesia Hummer said, “It’s quick and easy – just a cheek swab.”
But she stressed, “You need to be willing to donate marrow for anyone (not just Grace). You could be someone else’s perfect match.”
In the meantime, Ndayizeye is graduating on time and has her eyes on the future.
“I know I’m going to college. I’d like to work with little kids,” she said and flashed a huge smile. “I feel like I’m going to live to like, 80! I’m very hopeful.”