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In 2011, she made history there as the first black Miss UNA. Her next coveted role was as a college intern on Capitol Hill in Washington, D.C. But by far, the hardest part she ever had to undertake was that of a bone marrow failure patient.
Her family didn’t know where to start, or who to go to. Brandi began seeing a local doctor and one at Emory University Hospital in Atlanta, but she says both were “kind of confused” because they’d never met anyone with PNH. “It was scary having two blood disorders, so all of us together had to try to figure out how to make this better for me.”
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They worried that treatment would interfere with Brandi’s quality of life, especially after learning that her two sisters were not 100% DNA matches. Not knowing what would happen next, they also worried about the financial strain. But then they found hematologist Dr. David Araten of NYU Langone Health, and their prayers were answered.
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An AAMDSIF travel assistance grant made it possible for the Lewis family to go to New York for what turned out to be a pivotal doctor’s appointment. The family also attended our annual PNH/March for Marrow walk in New York, where Dr. Araten gives a presentation at the pre-event breakfast we host. That’s where Brandi was able to engage with her peers and learn valuable information from other PNH patients who were also experiencing fertility issues like she was.
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“They even had prayer sessions in our front yard when Brandi couldn’t touch anybody or talk to anybody. But she stood in the doorway and waved.” Their experience with Brandi’s rare diseases has taught them the importance of remaining calm and focused on the research, which they say is key. As her mom put it: “Don’t give up and remember to laugh and enjoy life. There were many times that we’d be crying in the hospital room, and yet we’d still find something to laugh about.”
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As Brandi told her story in the video, she had a lengthy treatment cycle for PNH. The first routine was ATG, followed by many months of medications---at one time, she was on eight different drugs per day. But the past two years she hasn’t had to take any of these medications, not even cyclosporine.
Due to the onset of PNH and the treatment regimen, she had to delay an entire year of college. She studied political science because she enjoyed learning about legal issues. Remarkably, her current work allows her to work on legal issues all day, in human resources for a payroll services company.
Brandi’s parents, also featured in the video, are doing well. They can finally relax as they witness her good health and happy outlook.
We all look forward to Brandi’s next steps on her journey. Congratulations, Brandi!