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When I was diagnosed with paroxysmal nocturnal hemoglobinuria (PNH) in May 2017, I thought the biggest battle I would face was the physical one. I was wrong. While the fatigue, blood clots, and pain were undeniably difficult, nothing could’ve prepared me for the mental and emotional toll this rare…

Battling my rare blood disorders, aplastic anemia and paroxysmal nocturnal hemoglobinuria, initially brought a sense of shame to my life. I was ashamed to be the sick girl who was living at home with her parents and dependent on them for daily needs. As Brené Brown wrote…

Life has a way of throwing unexpected challenges our way, and for me, one of them came in the form of the rare disease paroxysmal nocturnal hemoglobinuria (PNH). In May 2017, at the age of 27, I was diagnosed with this life-altering condition, which causes the destruction of…

The American historian and writer Alice Morse Earle said, “Every day may not be good, but there’s something good in every day.” It’d be nice to wake up every morning to see that it is what you consider to be a perfect day. Unfortunately, that’s not the reality…

I don’t know about you, but I find it hard to explain my symptoms to others. Fatigue is easy to confuse with laziness. Bruises on my body can make people wonder. Brain fog is hard to differentiate from forgetting things because I don’t care. As I battle aplastic…

Have you ever told someone you can’t do (insert activity) because you have a chronic illness? And have you said you weren’t feeling well to get out of whatever you didn’t want to do? And does the guilt then begin to flow through your mind — thoughts of “Am I…

Relationships can sometimes be difficult to create, sustain, and grow within. We manage many relationships in our lives, including those with co-workers, friends, siblings, spouses, and other family members. Living with aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH) meant that I’d entered a new world of navigating relationships…

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.

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…

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…