Photograph — xickle.com

World Sickle Cell Day was established by the United Nations General Assembly in 2008 to increase public knowledge and an understanding of sickle cell disease. It is celebrated annually on the 19th of June.

Sickle Cell Disease (SCD) has become a common and foremost genetic disease worldwide. Though there is still an increase in the number of sickle cell cases worldwide, the level of treatment that has been achieved so far can be attributed to the fast awareness campaigns, curable activities, early diagnosis and management. However, the story is not same in Africa, especially Nigeria. This is  because the permanent treatment required to live a free Sickle Cell Disease (SCD) life involves advanced levels of bone marrow transplants which are not readily available across Nigeria. Nigeria is said to have the highest number of SCD cases in Africa.

Subsequently, in October 2015, medics were delighted when Vanguard Newspaper reported that the University of Ibadan was in partnership with the University of Illinois and the University of Loyola, Chicago to discover “a permanent cure for the terminal disease.” The Nation also reported that the University College Hospital (UCH), Ibadan disclosed its intention to commence an advanced bone marrow transplant that will ensure a complete cure for patients with Sickle cell diseases. Sadly, there hasn’t been reports of anyone cured of this disease in Nigeria, but there are many survivors. These survivors are dubbed ‘warriors’ and this year’s awareness on sickle cell in Nigeria is dedicated to celebrating the warriors who constantly live with the excruciating pain and still thrive in the society.

This drawback in Nigeria’s healthcare agencies to proffer a permanent solution to this fatal disease has not deterred supporters and Warriors in this year’s awareness campaign. Various organisations have held rallies and follow up conversations on social media using various hashtags to commemorate the day. This avenue has birthed a safe space for warriors battling with SCD to share their stories and life experiences with the entire world.

A warrior’s story needs to be told over and over, far and wide. It is the story of survival against the tide of pain, medical bills, and the emotional upheaval of living with sickle cell.

It is against this backdrop that Wana Udobang a popular radio presenter, journalist and human rights activist began a series titled ‘Warriors.’ She says that “Warriors is an interview series that takes an in-depth look into the lives and experiences of people living with Sickle Cell disease.” She began the series with Ms Toyin Oshinowo whose shared experiences with pain will leave one gaping in awe at the tenacity of will a human possesses. “Pain is complicated,” Toyin Oshinowo says.

Showing love, care and companionship is a prerequisite to helping those living with SCD cope better in the society because this disease is not communicable but hereditary.

However, knowing your SCD status is essential in these times and also prevention is advised.

To join the conversations on social media, follow the hashtags #KnowYourSickleCellStatus #WorldSickleCellDay #MySickleStory #BreakTheSickleailence #SickleCell

Excerpts of some warrior’s stories can be seen below:

Elsewhere on Ventures

Triangle arrow