Since 2008, the 19th of June has been set apart by the United Nations as a day to increase public awareness of the Sickle Cell Disease (SCD) which has been officially recognised as a global health concern. Being a carrier of the sickle cell trait, knowing family members suffering from it, and having lost a friend to it, I am no stranger to the struggle and fear associated with having this condition.
The Blame Game
For many Nigerians, knowledge about the disease and its cause is limited to “if AS marries AS the children will have it and they will die.”. So, I put together this article for AS couples to shed some light on this limited perspective of the situation.
Other results from this online survey revealed that most people, particularly AA genotype persons, hold parents responsible for the Sickle Cell Disease, accusing them of being selfish and admonishing them for giving life to a child. Many hold strongly that AS genotype couples should never be allowed to marry. Ironically, the same respondents believe in the liberty to love and marry as one’s heart desires, however, this view does not apply to individuals who are carriers of the trait.
When asked if it would be acceptable to force AA genotype persons to only marry AS or SS genotype individuals (for the greater good), most objected.
Summarily, most Nigerians who aren’t carriers of the disease do not consider Sickle Cell Disease “their problem” and would be satisfied with a strict social policy as a convenient solution, as long as it doesn’t directly affect them.
Good News from Research Efforts
Past the finger-pointing, there is a cure for Sickle Cell Disease. Following bone marrow transplant and stem cell transplant, which requires a donor who is a bone marrow match (preferably a sibling), there have been significant advancements in gene therapy.
As Dr Philippe Leboulch, a professor of medicine at the University of Paris told CNN in this article, researchers extract bone marrow from the patient, harvest the stem cells and alter the “genetic instructions” so that they produce normal red blood cells. Then, they treat the patient with chemotherapy for four days to eliminate diseased stem cells. Finally, they returned the treated stem cells into the bloodstream and the new cells start to make new healthy round blood cells leaving the patient sickle cell free.
Gene therapy is said to be easier because it does not require finding and convincing a donor, the patient is his/her own donor. The possibility of rejection or a mismatch is completely eliminated.
Here in Nigeria
Nigeria is said to have the highest number of SCD cases in Africa. Consequently, in October 2015, I was ecstatic when the 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 a patient with Sickle cell diseases.Sadly, I am yet to hear of anyone who has been cured of this disease in Nigeria.
Sadly, I am yet to hear of clinical trials conducted or anyone who has been cured of this disease in Nigeria.
Action and Contribution
Even if you do not carry the Sickle Cell trait, please get involved and support the cause to fight the disease.
“Love is not patronising and charity isn’t about pity, it is about love. Charity and love are the same — with charity you give love, so don’t just give money but reach out your hand instead.” ― Mother Teresa
▪ Severe cases of anaemia arise as a result of complications of Sickle Cell Disease. This condition is resolved with blood transfusions. So make time to donate blood at Blood Donation Drives in Lagos and Abuja.
▪ Volunteer or make a donation to Sickle Cell Foundation to support sufferers
with medication, and research bodies with funds to facilitate the quest for a cure.
▪ Encourage your friends and family members to go for a genotype test
▪ Finally please follow them on Social Media to be up to date on activities in your area and spread the word.
Please be part of the solution, we need you.