Here’s a little fun fact about me: Christmas is my second favorite time of year after August, which I like because it’s one of the hottest months here in the U.K. It’s also my birthday month, and the month that Notting Hill Carnival is held. With this festive period…
Shaniqua’s Sickle Chronicles
— Mary Shaniqua

Living with sickle cell disease requires more of a patient than just managing symptoms. One major necessity is the ability to effectively communicate one’s needs. Self-advocacy is a lifelong skill that enables people with the disease to effectively navigate healthcare systems, educational settings, workplaces, and personal relationships. When nurtured…

Iron overload is a side effect that some sickle cell patients suffer from as a result of blood transfusion programs being used as long-term treatment plans. Back in September, I wrote about trying a new medication to address my iron overload problem. For the past two years,…
Recently, I was playing a question-and-answer game with my partner, and one question that came up was, “What message would you like to tell your younger self?” My answer essentially was about prioritizing and measuring my life by the important things. In my younger years, I had a life plan,…
In a previous column, I spoke about some of the things that trigger a sickle cell crisis. This week, I want to share some pointers on how I try to address a crisis in its early stages while at home. Electric blanket I have a heated electric…
A sickle cell crisis is one of the main symptoms sickle cell patients face. However, just because we all experience the same symptoms, or similar ones, it doesn’t mean the condition affects everyone equally. As I meet more sickle cell patients, I’m further convinced that the condition affects each…
Iron overload is a common side effect for sickle cell patients participating in blood transfusion programs. When this happens, the body’s excessive iron levels can cause an accumulation of iron in the body’s organs, which can lead to serious organ damage. I was diagnosed with iron overload…
I turned 31 on Aug. 20, 2020. That’s 31 years as a sickle cell patient, and what a journey it has been so far! As sickle cell patients, we are often exposed to all sorts of negative comments and stigmas surrounding the condition. So, I want to use my…
Have you ever informed somebody of your diagnosis and found their response to be a little annoying? I often have. I try to extend grace in such situations because usually people don’t know what to say and, as such, speak without considering the ramifications. With that in mind, here are…
Living in lockdown the past few months has been quite an experience. If you had asked me before the pandemic if I could stay indoors for 12 weeks and go out only for hospital appointments, I would have told you it was impossible. But here I am, well…
Whenever I meet new people and tell them I have sickle cell disease (and explain what it is), they often ask how they can help. June 19 is World Sickle Cell Awareness Day, so I thought it appropriate to discuss ways that you can help the sickle cell community,…
I recently was admitted to the hospital during a sickle cell crisis and because of suspected COVID-19. My experience was harrowing. I have experienced many things as a sickle cell disease patient. I have had pneumonia more frequently than I can remember, suffered collapsed lungs, had deep vein…
Living with sickle cell disease, I rely on several medications and treatments for various situations. In general, I take medications for my own well-being, as research shows that sickle cell patients who struggle to comply with medication regimens tend to experience a lower quality of life. Ergo, to have…
Recent Posts
- When a sickle cell pain crisis interrupts a stretch of good health, part 1
- Scientists discover how stressed red blood cells make hemoglobin
- How my sickle cell disease advocacy has evolved over time
- New study links sickle cell anemia to lower ovarian reserve in women
- $3M Breakthrough Prize honors duo whose work changed SCD treatment
- Etavopivat Phase 3 results support potential approval in sickle cell disease
- New diagnoses result in new grief and a new relationship with my body
- 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