News and information
Find information about Sickle Cell Disorder and explore Solome’s personal blog, where she shares her journey and experiences.
My Posts
“My First Crisis Is Not My Last Word”
I was born where leaves held witness. Where a young girl became mother with no applause, And the banana grove cradled my first scream. I bled before I spoke. I burnt before I walked. And they named it a sickle cell crisis— But I call it origin. My first pain did not ask for permission. […]
September is Sickle Cell Awareness Month.
“Understanding Sickle Cell Disease”September is Sickle Cell Awareness Month. Let’s break the silence and shine a light on the complications millions face every day. #SickleCellAwareness Priapism in Sickle Cell DiseaseMale priapism is the persistent and unwanted erection of the penis that is painful and rigid Female priapism refers to persistent, painful clitoral engorgement due to […]
Saltwater Between My Bones
The hospital smells like bleach and half-mended prayers. Mama’s hands rest on my ankle—swollen again—and I pretend not to wince. I’ve learned to treat pain like an old friend who overstays their welcome: nod, breathe, endure. They call it sickle cell disorder in charts and whispers. I call it the thief of mornings. It robs […]
Women with Sickle Cell Disorder
How does Sickle Cell Disorder affect women in particular? Women sufferers may feel that they experience stigma regarding their Sickle Cell Disorder as they are not fulfilling societal expectations of femininity and motherhood. For example, women sufferers are often seen in jumpers and coats in the summer rather than more seasonal or fashionable clothes, as […]
The universal plan
The universal care plan is a digital care plan that service users/ patients can create together with their health care professionals, to help the patients to have consistence of care, to make sure the patient gets the right level of care that they need. The digital care plane is far better than the old version […]
Pfizer’s withdrawal of Voxelotor
Pfizer withdrew Voxelotor (OXBRYTA®) from NHS and the world. The reasons are that it had bad after effects. This was a big blow for the sickle cell patients because already there is a very limited options to manage the sickle cell disorder which is debilitating to those affected. We hope more options are created because […]
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