Complementary therapies improve my quality of life with sickle cell
Would you believe me if I told you that I was once hospitalized with a sickle cell crisis, and a reflexology foot massage is what caused the pain to subside? Probably not, right?…
Shaniqua’s Sickle Chronicles
— Mary Shaniqua
Mary Shaniqua is a sickle cell patient (HbSS) living in the United Kingdom. She was diagnosed with sickle cell at 18 months old and uses “Shaniqua’s Sickle Chronicles” to narrate her experiences, to educate healthcare professionals, as well as empower and embolden other sickle cell patients. Mary Shaniqua is committed to raising awareness of sickle cell and its impact, with an aim to educate non-haematological specialist healthcare workers and the general public more widely on the life of a sickle cell patient.
Featured Post
How to provide practical support to a partner with sickle cell
Keeping with the theme of February, the month of love, I wanted to offer some practical tips for how to support a partner with sickle cell disease. The reality of living with a…
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We’re not doing enough to improve sickle cell patients’ quality of care
Recently, for the first time I can remember, sickle cell disease has been in mainstream media quite a bit. Because much of the discourse has focused on treatments and curative therapies,…
Clinical trials aren’t the only way to get involved in sickle cell research
Last week, I shared that I’m conflicted about joining clinical trials that test potential treatments for sickle cell disease. Although I don’t yet trust the healthcare system enough to participate, there are…
I know clinical trial participation is crucial, but I still hesitate to join
A few weeks ago, I attended a sickle cell awareness event for pharmacists. I was simply there as an interested sickle cell disease patient; I don’t work in the pharmaceutical industry. One…
We aren’t doing enough to create access for those with a disability
When you hear the word “accessibility,” what thought springs to mind? For me, accessibility is about making adjustments so people with individualized needs can experience a building, activity, document, or other part of life…
How pharmacists can play a role in sickle cell disease advocacy
I was recently invited to attend a pharmaceutical networking event that focused on sickle cell disease. The event was hosted by Black Pharma, a nonprofit organization that promotes greater representation of Black…
A (now outdated) sickle cell prognosis is no excuse for ableism
Sometimes when we patients talk about the stigmas associated with sickle cell disease, I don’t think people fully grasp what we mean. I’ve written about some of the negative connotations about sickle…
Navigating grief and loss in our sickle cell community
There is something that some people do that bothers me when I tell them for the first time that I have sickle cell disease. I’ll introduce sickle cell disease into the conversation, and…
Preventive measures should be a part of every sickle cell care plan
For those who are unfamiliar with my previous columns, I often write about a recurring theme: the importance of preventive action in the management of sickle cell disease. I am a staunch…
The benefits of community engagement across our rare diseases
Last Friday was notable for two reasons: my most recent column was published, and I canceled a planned meeting with two friends at the last minute because of pain. That had me…
To improve our quality of life, we have to imagine greater awareness
I’m extremely passionate about raising awareness of sickle cell disease. That probably comes as no surprise, considering I have the condition and write a patient column focused on precisely that! Still, I…
Even preparation is no guarantee of easing a crisis
I recently suffered a sickle cell crisis while on a trip to Jamaica, which was particularly difficult because my partner was also ill. I was in an unfamiliar location, and the pain…
