From Fear to Fighter - a Column by Brandi Lewis

We need greater awareness of unconscious bias in healthcare

Even when we’re not aware of it, we all make judgments about other people, whether it pertains to their appearance, financial status, how they communicate, etc. This is known as unconscious bias. The saying “first impressions are lasting impressions” exists because we tend to make quick assumptions upon meeting others.

How to spread awareness on Rare Disease Day

As someone with two rare blood disorders, aplastic anemia and paroxysmal nocturnal hemoglobinuria, I’ve endured many difficult moments. It was challenging to obtain a correct diagnosis, access treatment, and find a doctor who specialized in my conditions. The rarity of my blood disorders was the catalyst for me to…

My daily routine has changed since my PNH diagnosis

Living with aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH) has altered my day-to-day routine. My daily routine today looks much different than when I was newly diagnosed. Those days were filled with doctor appointments and unscheduled trips to the emergency room. Now that I’m in a better place than…

What blood donors mean to me as a transfusion recipient

Blood donors are silent heroes who aren’t recognized enough. As someone who’s received many blood transfusions, I couldn’t help but wonder how we got to this point of safely sharing healthy blood in hopes of saving lives. According to the American Red Cross, the history of blood transfusions began in…

How greater health equity can help PNH patients

The World Health Organization (WHO) defines equity as “the absence of unfair, avoidable, or remediable differences among groups of people, whether those groups are defined socially, economically, demographically, or geographically or by other dimensions of inequality.” WHO applies that concept to health equity, noting that it “is achieved when everyone…

The importance of shared decision-making in healthcare

Do you know what shared decision-making means in terms of health? It’s not a widely discussed term, but it’s important to understand. With my diagnoses of aplastic anemia and paroxysmal nocturnal hemoglobinuria, learning about this concept helped me feel I was part of my care team. According to…

How I set myself up for success while living with PNH

As we start a new year, I strive to be consistent and set myself up for success. I consider what I could accomplish and which actions I’ll need to take to achieve my goals. But as someone with aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH), I know I’ll…

How I work out while battling chronic illnesses

I recently wrote a column titled “How I’m reflecting on 2024 while preparing for the new year.” In it, I shared that I want to work out more consistently in 2025, exercising three or four days a week. That made me think about my answer to the question, “How…

What it’s like adjusting to life with 2 rare blood disorders

What does it mean to “live rare”? After I was diagnosed with two rare blood disorders, aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH), it took me years to understand how to navigate tough times and adapt to life with my rare diseases. According to the National Organization…