Most high school seniors are worried about finding a prom date, getting into their top-choice college and fighting off "senioritis" long enough to pass their finals.
For Sheldon Mba, life wasn't so simple.
The then-18-year-old found himself chronically sick, usually with flu-like symptoms. If he got a cut, the bleeding would take longer than normal to stop. However, this didn’t trigger any real alarm until he went to get vaccinated.
“My white blood cells started to attack me, which in turn accelerated the signs of my rare blood disorder,” said Mba. “That’s when the doctors discovered that I had a red blood cell count of 3.5, explaining my fatigue, and no white blood cells or platelets.”
He was later diagnosed with aplastic anemia, a bone disorder that causes marrow to stop producing blood, and PNH (Paroxysmal Nocturnal Hemoglobinuria), a rare affliction of GPI-linked proteins. This life-threatening disease is marked by blood clots, impaired bone marrow function, and the destruction of red blood cells.
“I had the mentality that I was an athlete first so believe it or not I was wondering what kind of shot or pill can I take to get rid of this,” recalled Mba after hearing the diagnosis. “I was about to graduate high school and go off to college. I just wanted to get my life back to where I thought it should be.”
At nineteen, he is one of the 70 percent of patients who must rely on strangers for a marrow match, because one was not found within his family. An even more startling reality is that African Americans are the most difficult ethnic group to match. According to Nadya Dutchin, National Account Executive at Be The Match, a nonprofit that runs the largest registry of marrow donors, Blacks have a 66 percent chance of finding a match within their own ethnic group.
“That’s just terrible to be honest with you,” Dutchin shared. For Mba, this disorder brought about a feeling of stagnancy. “I felt stuck in life because it forced me to stop. I questioned, ‘What have I done with my life up to this point?’”
According to the North Carolina Central University sophomore, he at first felt defeated, but it caused him to make adjustments that were ultimately for the better.
“I noticed that I try to make everyone happy, because I’m a people pleaser, and would end up forgetting to take care of myself. But now, I’m sort of forced to put myself first or else I will physically start to feel the repercussions. I’m still not out of it, but I feel like I’m on the pathway towards victory.”
Mba credits the sure-footed advances he’s made so far in part to his family, namely his brother, mom and grandma.
“Regardless of the illnesses, the doctors, hospitals… you still have to live your life, but then you have to remember that you’re sick,” he says. “That’s why it’s important to have those ‘rocks’ who will give you unwavering support through it all. I’m really blessed to have such strong people in my life.”
It also helps to have something outside of the disorder, or as Mba calls it: “this one big hectic thing,” to focus on. For him, it’s dance. “It takes me outside of myself and into a better place. Even if it’s just for two seconds or 10 minutes you know. If all else fails me, I still have my dance.”
Though the regimen that doctors at UNC Hospital have placed Mba on is maintaining his level of health, he is concerned about how long he will be able to continue like this.
“By taking the same pills—the same dosage, your body starts to build up a resistance against the medication and then what happens when the pills I’m taking don’t work anymore?” questioned Mba. “It’s just something that has been in the back of my head.”
The process for finding a marrow match is difficult, which is why it is incredibly important to respond quickly and follow through when you as the donor are placed. It is not unheard of for an African American to have 5 or less matches, according to Dutchin.
“If you’re called and happen to be a person of color, multi-racial, Asian, African American, Hispanic, Latino – please respond quickly,” she stated. “You’re probably the best chance for that person having survivorship.”
People tend to match others from their own ancestries, so a greater range of registered donors significantly increases match possibility. The donors with the highest potential of being requested by transplant officials are between the ages 18 and 44. An even better pool: those 18 to 25.
According to Dutchin, clinical trial has proven that the length of survival for a patient who receives a transplant, and more importantly the lack of side effects, from a younger donor are notably higher than that from someone older.
September kicks off a