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Imagine: You’ve had a long and stressful few months, you’ve accrued some leave at work, and you’ve saved up some money, so you decide to take a holiday. You already have a bucket list of locations you want to visit, so selecting a holiday destination, accommodations, and itinerary took you…

My ultimate goal as a sickle cell advocate is for advocacy to no longer be necessary. I’m a private and introverted person and usually prefer to keep to myself. However, as an advocate, I must put myself out there and leave my comfort zone to share my journey with…

I’ve recently been asked a couple of times to share something random I’d like to do. I’ve responded that I want to play volleyball. I played the sport a few times in school and loved it, but never pursued it. Last year, I watched an anime show called “…

It had been roughly four weeks since my port-a-cath was inserted, and I was due for my next blood transfusion. However, that transfusion would be different than previous ones — it was an exchange transfusion, when until that point, I had mostly been receiving only top-up…

Zinc is an essential mineral and a vital component of many proteins in your body, and it plays a crucial role in immunity, vision, taste, smell, skin health, and sexual function. Scientists have known since 1975 that people with sickle cell disease have low zinc levels and often…

My main focus in managing sickle cell disease is preventing vaso-occlusive crises, the symptom I struggle with most. However, due to the seasonal change in weather, fatigue is another common sickle cell symptom that has been difficult for me in recent weeks. On a typical day, I…

Recently, I’ve been trying to recall what the pain from a sickle cell crisis is like. Not remembering must sound a little weird, since a crisis is my most prominent symptom of sickle cell disease. Even on good days, I should have a solid grasp of what…

When living with a condition like sickle cell disease, effective communication between different hospital departments and the patient is imperative — especially when the patient is having a surgery that could result in complications. I recently had a port-a-cath placed so I can receive blood exchange transfusions…

I’ve depended on optimism to protect my sanity, but I’ve always known I needed to be realistic. Sickle cell disease affects people on a spectrum, and pain is always a feature no matter where someone lies on that spectrum. My son, a 2-year-old with sickle cell, and I have…

Now that the summer months have passed, I find that it’s harder to forget that I have sickle cell disease. You may be thinking, “How can she ever forget that she has sickle cell?” Well, I never really forget, but there are times when looking after myself requires less…