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…
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
Here’s the truth about disability and employment
In the wake of the British government announcing recently that it plans to cut its welfare budget by more than £5 billion ($6.5 billion), I’ve noticed a shocking number of comments in mainstream and…
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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…
The importance of self-care in managing sickle cell disease
In popular culture, self-care often seems to be equated with indulgence or luxury, such as spa visits, retail therapy, or fine dining. But I believe this perception is flawed, and that buying into it…
How I find the silver lining while living with sickle cell disease
As most of us know, sickle cell can be a debilitating disease. I’ve been diagnosed with it since I was 18 months old, yet it still causes me much pain, agony, and…
