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My sickle cell story: how one woman is raising awareness

SICKLE CELL WARRIOR: Annabelle Ashalley-Anthony

AT JUST 10-days-old Annabelle Ashalley-Anthony was diagnosed with the sickle cell disease, a condition which affects the red blood cells and is particularly common among people of African and Caribbean heritage.

In her younger years, Ashalley-Anthony, now 30, struggled immensely with the disease, both physically and mentally, spending the majority of her early life at St Mary’s hospital undergoing various medical treatments and therapy.

“The hospital became my second home… I even took my exams in hospital,” Ashalley-Anthony said.

Understanding the condition was something that Ashalley-Anthony initially had difficulty doing. “I didn’t even know my triggers,” she said. Certain external and lifestyle factors such as cold weather, stress or strenuous exercise can act as triggers for sickle cell episodes of pain among those living with the condition. Not knowing what brought on the symptoms of her disease meant Ashalley-Anthony often missed out typical childhood activities, out of fear of suddenly falling sick.

And it wasn’t just Ashalley-Anthony who struggled to comprehend sickle cell disease. “Explaining the severity [of the illness] to people was hard,” she said. “I don’t always look sick…I always had to prove I was in fact sick.”

At times, even medical professionals displayed ignorance. “Once two qualified doctors asked me where I had got the disease from...it was shocking."

These experiences prompted Ashalley-Anthony to raise awareness of the illness, something she believes is paramount.

Despite her continued battle with the disease, the sickle cell warrior has done nothing but flourish. Ashalley-Anthony graduated from the University of Westminster with a BA in creative writing and English literature and has gone on to publish a number of autobiographical short stories.

“Books get people interested, images grab their attention, and then we can spark a conversation from there,” Ashalley-Anthony said.


STORYTELLER: Annabelle Ashalley-Anthony's experience of living with sickle cell disease has inspired her books

Ashalley-Anthony also spends much of her time raising awareness about sickle cell disease by doing everything from curating her own jargon-free pamphlets decoding the disease to hosting fundraising bake sales for treatment advancement.

Her book, A Conversation with Death tells the story of a young girl with sickle cell disease who is seeking euthanasia due to the complications that come from her disease. The story won the Henshaw short story competition.

“Whilst dark, it was a story that needed to be told, [as a sufferer] being strong is important but sickle cell does still claim our lives,” Ashalley-Anthony said.

She has recently finished writing a children’s book The Sickle-Cell Warrior which depicts a young boy, Alfie, triumphing against his disease.

“The warrior is Alfie’s alter ego, he manifests when Alfie is unwell, because being able to handle pain is almost like having a superpower,” Ashalley-Anthony said.

The book is set to reach stores by the end of September.

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