Lisa Brandt had dedicated herself to a life of public service as an Air Force reservist, police officer and EMT. For nearly a decade she has been a Chesapeake firefighter. But earlier this year she received news that would put her work in jeopardy.
She was diagnosed with paroxysmal nocturnal hemoglobinuria (PNH) with aplastic anemia, a rare disorder — one in a million — in which Lisa’s body not only doesn’t make enough blood cells, but her immune system also attacks the dwindling number of red blood cells she has.
Lisa speaks in soft, short breaths from her home in Chesapeake. “Today’s one of the rough days, but I’m hanging in there.”
The medication eculizumab — known by the brand name Solaris — is the only current chemical treatment. Some of the side effects are headaches, nausea and fatigue, which limit her ability to do many physical tasks and frustrate an otherwise active and engaging personality.
“I am a peer-fitness trainer, which means we run the academy, [run] the PT and we train to be fit for duty,” Lisa says. “That’s my phrase, ‘Fit for duty.’”
Lisa is no stranger to the effects of strong treatments. Three years ago, she emerged victorious from a battle against colon cancer. But this fight requires more than she’s needed before.
“I need somebody else to save my life.”
The cure for this disease (yes, it can be cured) is a bone marrow transplant. The best candidates for donation are the patient’s siblings, but only a quarter of these match the donor’s human leukocyte antigen (HLA), which regulates the immune system. That means over 70 percent of patients who require life-saving transplants must use the registry to find a potential match.
To find these potential lifesavers, doctors search Be the Match, the country’s donor registry operated by the National Marrow Donor Program (NMDP). The registry has facilitated over 92,000 transplants since 1987.
“We serve patients who have been diagnosed with blood cancers like leukemia and lymphoma, or other diseases like sickle cell, who can be cured through transplants,” says Lauren Mueller with Be the Match. “We help match patients with a suitable donor on our registry if they don’t have a suitable match with a sibling or someone in their family.”
Lisa recalls when she and her captain went to the Massey Cancer Center at Virginia Commonwealth University to get the results of her test. “I think I stopped listening after hearing that I didn’t have a match on the registry — the whole life expectancy thing … I just sat there.”
Patients are more likely to match with donors who share a similar ethnic background. Caucasians have a higher chance to match — roughly 77 percent of candidates who do not match with their family will find a match on the registry. Only 23 percent of African Americans will find a match, mostly because there are simply more potential Caucasian donor candidates in the registry than other ethnicities. Be the Match is always, always seeking more donors to help increase everyone’s changes.
“How do you win the lottery?” Lisa asks. “You have a one in a million chance, so how do you win? You play, a lot, and that was my mindset — to get as many people registered as possible.”
When Lisa first posted on Facebook about her condition, people around her started to notice how crucial it is for people to help. Lisa is a CrossFit guru, and her coach, Drew Kastelic, took the banner and ran with it. Within a week they had set up an event to register more people to be donors. “This was way, way bigger than me. I started to realize that I’m not the only one out there,” said Lisa.
“I literally stopped thinking about myself,” Lisa says. “It helped me not be so overwhelmed in myself and worrying about saving my life. It switched to how many people’s lives can be saved as a community in Hampton Roads.”
The process for anyone to participate is simple: after registering on the website (join.bethematch.org), Be the Match will send a package with directions on how to take a cheek swab and return it, and it’s logged into the national database. When a patient requires a donor, a doctor can search the registry with the patient’s (HLA) markers against the pool of potential candidates. If there’s a match, the donor is given a health screening and if cleared, donates blood marrow while sitting in a chair as if they were giving blood.
Another option is an outpatient procedure in which a needle is used to extract marrow from the pelvis bone. Though the procedure requires local anesthesia, it provides the best transplants for children and young adults.
Be the Match covers all travel and medical expenses, so donors pay nothing to save a life.
Lisa ended up matching with her sister, Nicole, but after five Solaris treatments, her blood counts improved and her doctor took the transplant off the table. Those with her disease also have a high risk of not surviving a bone marrow transplant.
This, however, hasn’t stopped Lisa from advocating for others on the registry, such as Dorian Gramajo, a father of five, a popular DJ and owner of The Mambo Room dance studio in Norfolk. Dorian, who had been fighting stage 3 multiple myeloma, a condition in which the cancerous cells multiply in the bone marrow, sadly lost his battle in September. He died shortly before his 47th birthday.
Dorian had spent months in the ICU at Duke University as doctors attempted to keep the cancer at bay until a transplant could be found. Because Dorian was from Guatemala, there were fewer of his genetic background in the registry, so his chances of finding a match were small. For Hispanics and Latinos, it’s about a 46 percent chance of finding a match on the registry. That’s why it’s so important for people of all backgrounds to sign up, to have their cheeks swabbed — to better everyone’s chances at finding a match.
“He fought like a champion but in the end the cancer was just too strong,” Dorian’s wife, Tracy, wrote on his GoFundMe page.
Losses make people like Lisa Brandt more determined than ever to spread the word.
“The work still needs to be done,” Lisa says. “There are too many of us out there. My support group is full of people who are unmatched … there are too many of us playing the lottery.
“The more we get people to do this, the more chances we have.”
