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…
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
Why it’s important to celebrate good care when we receive it
I’ve previously written about the difficulties I’ve sometimes faced when trying to get my prescriptions filled to treat sickle cell disease. In a stroke of luck about a year ago, I found a…
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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…
Avoiding illness as an immunocompromised patient is frustrating
Is there a worse feeling than when someone you love is unwell and you can’t help them? Because I have sickle cell disease, my immune system is compromised. This means I can catch…
A better resolution for those with chronic illness and disability
At the end of each year, it seems like everyone and their dog publishes a round-up on social media of all the wonderful things they experienced in the previous 12 months. It’s great, as…
My emotional journey through learning about the sickle cell ‘cure’
It was the evening of Nov. 17. I’d finished work and was going about my usual evening activities when my mum called to catch up. She asked if I’d heard the news of an…
Finding alternative ways to combat sickle cell pain at home
Note: This column describes the author’s own experiences with opioids and alternative forms of pain relief. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.
Tackling the enemy of cold weather with sickle cell disease
On Sunday, Oct. 29, daylight saving time ended here in the U.K., meaning we set our clocks back one hour. In the week leading up to this, we experienced a sudden drop in temperature.
Imagining sickle cell pain: Bring on the tarantulas and grinding metal
It’s no secret, especially for those who read this website, that one of the main symptoms of sickle cell disease is a vaso-occlusive crisis. When I say I’m experiencing one of those,…
When sickle cell management feels like a constant battle
Why does everything have to be a fight? I ask this because the past few weeks have been frustratingly difficult for me. I recently had to drive to a different county to sort something…
