Columns

When depression hits a person with a chronic illness

Depression seeps in like a snake, slithering slowly as it makes its way into your life. You feel it there, but only a little. Then, one day, the full force hits you. Depression has a way of robbing you of your joy and happiness. It becomes regular to miss events…

How my PNH diagnosis affected my mental health

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…

Things to help boost mood on a not-so-good day

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…

The importance of relationships in navigating our rare journeys

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…

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…