How can you help a loved one with sickle cell disease? As a patient, I’m asked this question frequently, especially when I’m unwell. The reality is that there’s no single grandiose action that will help people living with sickle cell disease. I’d challenge loved ones to think smaller,…
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…

I graduated from college in 2010. Fortunately for me, I was able to secure a job before I had even finished school. In August of that year, after finishing my final exams, submitting my dissertation, and passing a background check, I began a full-time job. I’ve been working ever since,…
I’ve shared some of the hurdles I face when traveling abroad as someone with sickle cell disease. I now have something else to add to the list. I recently returned home to the U.K. after a three-week trip to Jamaica. Not only was it my first long-haul flight,…
In many of my columns I’ve referred to suffering a sickle cell crisis. But what does that mean? Sickle cell disease is a disorder that affects the red blood cells. These cells are usually circular and biconcave, allowing them to easily transport oxygen around the body. But in…
Last month, I suffered a sickle cell crisis. After battling the pain for four days, I decided to go into the hospital on Dec. 12. Unfortunately, that was a challenge. The first hurdle was securing an ambulance. For the first time in my life, I was put on hold…
For me, 2022 has just been OK in terms of sickle cell disease. I’m still not where I’d like to be health-wise, but I’m getting closer. One thing I’d really like to celebrate is that I haven’t contracted any severe infections this year. That is a big win, and…
Earlier this week, I received an email that left me in tears. Its content is unimportant. But what I can share is that it was disappointing and related to things I require to manage sickle cell disease. I had been fighting for these things for nearly two weeks. My…
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…
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…
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…
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 shared that I’m on a blood transfusion program as part of my sickle cell treatment. There are two key types of blood transfusions: blood exchanges and top-up transfusions, which are quicker and delivered through a cannula, usually inserted into the hand. I started undergoing top-up…
Recent Posts
- Fetal hemoglobin protects against sickle cell lung problems: Study
- Reflecting on a year of choosing myself while living with sickle cell disease
- New year, old goals, because repeating health resolutions works for sickle cell
- Researchers compare gene therapies for sickle cell disease in mice
- Emmaus to sell North American rights to sickle cell treatment Endari
- For sickle cell patients, developing self-advocacy skills starts in childhood
- Standard sickle cell treatments slash stroke risk in children: Review
- Is sickle cell disease considered a disability?
- Tips for enjoying the most wonderful time of the year with sickle cell
- Big Nova donates $3M to expand access to stem cell transplants