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I’ve often considered myself unlucky to carry the burden of sickle cell disease, which sometimes seems insurmountable. The journey can be isolating. I have aches and pains that nobody can see and emotions I’m still learning to process. In many situations, I’m constantly thinking about myself, particularly how to avoid…

Every year on my Twitter feed, I see a tweet about how important it is to know your genotype, as well as your partner’s. I agree with the rationale for this; it’s important to be as prepared as you can when dating. Understanding how genotypes work means you can…

As a child, the ground seemed like a sure thing. It was reliable and unshakeable, no matter how hard I jumped on it and no matter what I dropped. You can imagine my surprise when I learned about earthquakes. I couldn’t believe that something as strong, solid, and firm as…

The dating scene has shifted significantly in recent years. It’s common nowadays to meet people online through social media or dating apps. Virtual dating allows someone to create a profile that showcases their best qualities. It can include anything from favorite foods to most embarrassing moments. In building my profile,…

Just when you think sickle cell disease can’t get any stranger, it does. Growing up, I had a habit of eating tissue and paper that continued until I was about 15. (I’m really exposing myself here.) It makes sense how such a habit could arise. As babies, we…

Several decisions I make regarding my health are weighed up and thought out on a finely balanced scale. A sickle cell crisis can happen at any moment, so doing what I can to avoid my triggers is always at the forefront of my mind. I’ll contemplate questions like,…

As someone with sickle cell disease, I’m very passionate about blood donations because this selfless act of kindness can change a person’s life, or even save it. Many donations go toward blood transfusions, a critical treatment for sickle cell patients. I can’t donate blood, so my advocacy efforts…

Advocating for the sickle cell disease community means drawing on my experiences to help communicate the issues its members are facing, and to attract, engage, and educate a general audience. But this takes a toll on me, as many of my memories are unpleasant and traumatic. Even so, I continue…

I spent much of the fall of 2019 in the hospital due to a sickle cell crisis. It became so severe that it affected my organ function and triggered a severe case of avascular necrosis. I was hospitalized on Aug. 28 of that year, and by the…

As a sickle cell advocate, a key skill I’ve had to learn is patience. I need patience to listen, to understand, and to let go of negativity. Early in my advocacy journey, I was speaking at an event, and an audience member shared their experience of having a family member…