A COMPELLING new book shines a bright spotlight on the stigma surrounding sickle cell anaemia, sharing the stories of 15 individuals living courageously with the condition.
Manjaleyon, written by Bahraini author Zainab Al Khabbaz, explores not only the physical toll of the disease but also the social and emotional challenges sufferers face daily, struggles that are often overlooked.
The 224-page book was officially launched last month at a special ceremony attended by a number of writers and literary figures.
In Bahrain, around 8,500 people are currently living with sickle cell disease, a group of inherited blood disorders that includes sickle cell anaemia.
The condition results from a genetic mutation that produces abnormal haemoglobin, causing red blood cells to become rigid and sickle-shaped.
“The book aims to show people that people living with this disease have lives and achievements they want to accomplish, even while fighting this battle,” the 28-year-old from Manama told the GDN. “Unfortunately, there is a great deal of stigma surrounding this disease. Many people face these challenges at work, in marriage, education and other areas of society.
Sickle cell pain treatment
“I wanted to challenge these misconceptions by amplifying the voices of 15 individuals who live with this condition every day,” she said.
Among the stories featured is that of 40-year-old Hameed Marhoom from Bilad Al Qadeem, who has lived his life authentically despite the challenges imposed by sickle cell anaemia.
Ms Al Khabbaz with her husband Haider Alradi, who designed the book
“There was an incident where he was involved in a serious car accident while returning home from the hospital following a sickle cell crisis, resulting in the loss of hearing in both ears,” she said. “Rather than letting this stop him from living his life, he became even stronger, dedicating himself to volunteer and humanitarian work.
“He eventually became the first Bahraini mentor at Med-el, the world’s first Bahraini agriculture development company.”
Another story highlighted in the book is that of 47-year-old Najat Al Matrook, from Duraz, who began experiencing symptoms in her twenties. Ms Al Khabbaz said she endured frequent and severe pain attacks, which took a significant psychological toll on her.
To cope, she turned to new hobbies, including reading, and began sharing her journey on Instagram. Her posts eventually inspired her to take on a personal challenge to read 100 books in a year, turning her experience into a source of motivation for herself and others and helped reduce her painful episodes.
Sickle cell anaemia causes painful episodes when rigid, sickle-shaped red blood cells clump together and block small blood vessels. This obstruction cuts off blood flow and oxygen to tissues, muscles and organs, causing severe inflammation, tissue damage and pain.
“Unfortunately, the psychological impact of living with this disease often misunderstood,” Ms Al Khabbaz said, noting that this became clear to her while interviewing the individuals featured in the book.
To explore the issue further, she launched a community survey on Instagram, which she shared on the messaging app, encouraging followers to participate and share. The survey, which tested the public’s knowledge of the condition, quickly gained wide engagement and strong participation.
“The results showed that there is still a major lack of knowledge and understanding within the community,” she said, calling for greater support. “Caregivers, in particular, need more guidance to understand how to help patients cope with painful episodes and the psychological impact these crises have, which can be extremely traumatic.”
Ms Al Khabbaz said she was inspired to write this book after her first book Doses of Light, which highlighted the stories of cancer warriors.
Earlier reports by the GDN indicated that sickle cell patients in the GCC miss nearly four days of school or work per month on average, according to the Sickle Cell Health Awareness, Perspectives and Experiences study.
In 2023, Bahrain successfully raised the average age of an SCD patient to 65, and approved a new medication that can be used to treat the condition from the age of five.
In addition, the Bahrain Oncology Centre (BOC) became one of the first centres in the world to offer ground-breaking CASGEVY (exagamglogene-autotemcel or ‘exa-cel’) gene therapy to SCD and transfusion dependent thalassemia.
n Those interested in purchasing the book can reach out to @_zaiinabmd on Instagram.
julia@gdnmedia.bh
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