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Home / Health Conditions / Rare Disease / MY STORY: A Rare Diagnosis Fueled My Passion To Give Others A Second Chance At Life

MY STORY: A Rare Diagnosis Fueled My Passion To Give Others A Second Chance At Life

Shaunise Robinson is a mother, a third-grade teacher and a doctoral student at Texas A&M. Her entire life is centered on education. However, a rare diagnosis taught her a powerful lesson and she's paying it forward as an advocate for bone marrow donation. Shaunise shared her life-saving story in her own words with BlackDoctor.org. 

In 2016, I went to my doctor for a routine check-up, and my labs revealed that my blood counts were severely low. I went straight to the ER, where a team of doctors worked to determine the cause of my blood counts – and how on earth I’d been functioning normally at all.

The diagnosis? Severe aplastic anemia. I’d never even heard of it. Basically, it means my bone marrow is empty. Bone marrow should have white blood cells, which fight infection and keep you from getting sick; red blood cells, which carry oxygen through the body; and platelets, which clot blood and help you stop bleeding. With aplastic anemia, I had little or none of any of these.

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It’s a rare disease. My best chance for a cure rested in finding a bone marrow donor, and I’m grateful to say that I recently received a transplant! But, for many patients, finding a match is not easy.

The national Be The Match Registry® helps connect patients like me with potential donors. However, as African-Americans, we have the most diverse genetic tissue types – there may be only one person out of millions with just the right ethnic background to be a match for a patient in need of a life-saving transplant.
That’s why we desperately need more African-American donors on the registry, especially those between the ages of 18 and 44. The more people who join the registry, the more likely it is for thousands of African-Americans with life-threatening blood cancers and disorders to find a match.

I haven’t let my diagnosis stop me, but it’s undeniably changed my life. I’ve put my teaching career on hold, because being around children puts me at risk of getting sick. I’ve had more blood transfusions than you could imagine.

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Still, I’m proud to say that I’m on track to graduate from my doctoral program this summer with a 4.0. My family has been a tremendous source of strength and support for me. And, I’m finding ways to turn my experience into a positive one. After meeting children and teens fighting similar diseases, I’ve been inspired to help them find ways to share their stories.

While I was lucky enough to receive a transplant, I will still do everything I can to help educate people on this amazing opportunity they have to give someone else a second chance at life.

To join the Be The Match Registry, all you have to do is get a cheek swab. Then, be ready, willing and available to donate if you’re identified as someone’s match.

There are a lot of misconceptions out there. One is about the actual donation procedure. Depending on the match and what the patient needs, there are two ways to donate: collecting bone marrow from the back of your hip and collecting blood from your arm.

When you donate, you’re under general anesthesia and feel no pain. Some donors do say that they were a little sore or stiff immediately after donation, but most say they would absolutely donate again. Their reason: a little discomfort is worth it when you could save a life.

As a community, we have an incredible opportunity to take care of each other through Be The Match. What if it was your children, parents, siblings, cousins or friends looking for a match? Every new potential donor on the registry represents a potential cure and a potential life saved. You could be the cure – visit BeTheMatch.org to join the registry and save a life like mine.

I never thought I would put my professional skills to work as an advocate for bone marrow donation – but I’m glad I did. My bone marrow transplant might help save my life.

By Derrick Lane | Published May 3, 2023

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