In my quest to better manage sickle cell disease, I’ve been thinking recently about the concept of delayed gratification. This involves resisting the impulse to accept an immediate reward in the hope of obtaining something more valuable in the future. I’ve heard this term mentioned a lot in reference…
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When children become adults, they must transition from pediatric to adult healthcare services. Transition programs are particularly important for helping patients with chronic conditions navigate this switch. A good program ensures patients are informed about any changes to their care and treatment, and I believe it should also help…
I can be a slow walker, which is controversial for someone who grew up in the city. The hustle and bustle of city life dictates that somebody, somewhere, is in a rush to get to where they need to be. It’s not that I’m incapable of walking faster, although sometimes…
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…
Recent Posts
- Study finds lower treatment use among SCD patients in sub-Saharan Africa
- Outside, looking in: The silent isolation of living with sickle cell disease
- Bias in sickle cell care may be tied to opioid stigma, new study finds
- How I advocate for my health needs while traveling for work
- Brain development changes seen in children with sickle cell anemia
- Beam to seek OK of gene-edited cell therapy risto-cel for sickle cell disease
- Agios to seek accelerated approval in US of oral mitapivat for SCD
- Japanese agency awards $32M to advance sickle cell treatment to trials
- Intentional lifestyle changes got me through winter without a crisis
- Chicago nurses lead charge to speed up SCD emergency care: Study