By Kingsley Agim
Barrister Onor-Obassi Egim Tawo, the founder of Okares Sickle Cell Foundation and author of a new book – “Rate Your Pain” – has stated that her work, a collection of short non-fiction stories on her experience living with sickle cell disorders, will “give a nudge on awareness creation towards a sickle cell free Nigeria.”
Barr. Tawo, who made the remarks, during the launch of ‘Rate Your Pain’, which held recently in the Conference Hall of Hotel 45 in Calabar, said sickle cell disorder is the most prevalent genetic disorder and a global public health concern, citing the World Health Organization, that over 300, 000 babies are born with severe forms of the disorder and the majority of them found in developing countries, particularly the Sub-Sahran Africa, with Nigeria sitting regrettably as the capital of sickle cell disorders in the world.
Decrying the negligible attention given to sickle cell disorder in Nigeria, the Cross River-born author quipped that if the attention given to HIV/AIDS and, more recently, corona virus was half as much given to sickle cell disorder, Nigeria’s inglorious status as the capital of sickle cell in the world would have long been relinquished.
“There is a lot that can be done in the area of creating more awareness about these disorders to help the Nigerian population make more informed choices in marriage and child bearing. Providing affordable and adequate medical services for persons living with the disorder will improve the quality of their lives, consequently reducing the sickle cell disorder mortality rates,” the author opined.
On the inspiration behind the 82-page “Rate Your Pain”, she averred: “I am sharing this collection of stories, real life experiences to help people understand what it means to live with sickle cell disorders, to reshape our belief systems and cultural constructs that permit us to be indifferent to the topic of genotypes and sickle cell disorders, and hopefully dissuade us from our continuous birthing of persons living with sickle cell disorders. I hope my stories equally give a warrior out there a reason to go on living; living like the pains do not count, living a wholesome life.”
“Rate Your Pain” is aimed at promoting the objectives of Okares Sickle Cell Foundation; to build a sickle cell free Nigeria, through enlightenment campaigns, particularly, to yet-to marry youths and care for persons living with sickle cell disorders,” the author concluded.
In his remarks, the Book Reviewer, Mr. Okpo Romanus, described the work as “a courageous and audacious attempt to better enlighten the people, through
candid and true-to-life accounts as well as experiences by the author, who is living and combating the disorder.
Mr. Romanus, who was also the Publisher of the book, revealed that in all his years in the publishing business, he had never been so emotionally caught up by a publication such as “Rate Your Pain, while calling on the masses, especially unmarried young people to get a copy of the “must have” book.
The author’s father, Mr. Egim Etta Tawo, spoke glowingly of her daughter’s courage of weathering the storm and turning her pain into becoming a leading light in raising awareness towards a sickle cell free Nigeria.
Recounting the tempestuous years of his family struggling with two children living with sickle cell disorders (later losing one in the fight with sickle cell anemia), Mr. Tawo expressed gratitude to God that his daughter has become a beacon of hope to similar others, engendering a sickle cell free Nigeria through her Foundation and publications.
Visit www.okaressicklecellfoundation.org to purchase “Rate Your Pain” and information on sickle cell.
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