• Features
  • Updated: September 29, 2023

Sickle Cell: Call For Supportive Community Amid Quiet Battles

Sickle Cell: Call For Supportive Community Amid Quiet Battle

We live in a world where quiet battles are fought behind closed doors, challenging the health needs of individuals in society.

One of these quiet battles is the sickle cell disorder that has over the years crippled the bright future of children across Nigeria and Africa.

Before the breakthrough in modern medicine, Africans saw sickle cell as an affliction of witchcraft or other superstitious beliefs. 

There has been awareness of the disorder following the breakthrough, especially among couples getting married.

In commemoration of the 2023 Sickle Cell Awareness Month, AllNews Nigeria interacted with some doctors and a sickle cell warrior to gain insight into the current state of awareness and the pressing need for support.

Narrating her ordeal, Aisha Adamu Magaji, the Vice President (admin) of the Maidunama Sickle Cell Foundation and the Welfare Director of the Gombe State Sickle Cell Association revealed that she was first diagnosed at age seven.

She noted that she had her family as her support system, reducing the challenges faced as a sickle cell warrior. 

”Growing up as a sickle cell warrior came with little challenges. I was diagnosed at the age of seven; my parents and siblings were there for me and was put on medications. 

”A medical report was submitted to my school to live by the dos and don'ts of the sickle cell disorder.   

”The importance of doing so by my parents is to ensure I have a comfortable life free from worries and pains both at home and school. 

"I was exempted from many punishments and school activities that could have triggered my crisis. 

"I do go eight months, a year, or even more without having a crisis attack and many people didn’t believe I was a warrior."

Speaking on her challenges, Magaji said she began witnessing challenges while at the university when the stress and environmental factors triggered her health condition.

She added that the factors led to her frequent admission to the hospital. 

"God so kind my Head of Department, lecturers, and colleagues were supportive and I submitted a medical report which whenever I missed a test, a make-up was in consideration for me and sometimes my exams were brought up to the school clinic for me to write while in bed.

"Living as a sickle cell warrior in Nigeria is not easy, the challenges include inadequate knowledge of sickle cell anaemia by the populace, a health system that is disoriented, sometimes you will be in severe pain, and yet hospitals are on strike or no bed space for you. 

"The National Health Insurance Scheme doesn’t cover major illnesses like sickle cell anemia and the majority of sickle cell warriors are left with huge financial burdens they can’t pay.

"A lot of warriors end up dying as the result of inadequate proper health care," she lamented.

She further narrated how having a supportive community of individuals with sickle cell disorder benefitted her to be on her feet.

"I was afraid of people knowing of my condition because some of them gave me a sympathetic look or sometimes said words like 'You are an Ogbanje or possessed by spirits', until I joined a sickle cell community called the Maidunama Sickle Cell Foundation (MAISCEF), Samira Sanusi Sickle Cell Foundation (SSCF) and later, the Gombe Sickle Cell Association."

She added that her membership in the groups enhanced her knowledge of the disorder, connecting her to different warriors with unique challenges. 

"I got to learn new knowledge about sickle cell anemia way better than I have ever imagined, and met different warriors with different complications that are lesser and some are unspeakable. 

"I was able to open up, accept myself the way I was created and embarked on advocacy and campaign against sickle cell anaemia, help less privileged warriors, and even did fundraising and seek blood donors for warriors in need.  

"I’ve acquired a lot of knowledge that medical practitioners won’t even inform you from our support network and learned to take care of myself much better," she said.

When asked about the specific resources or groups that have been particularly helpful in managing her condition, she said the groups she mentioned earlier significantly impacted her to manage her condition and support others.

Conveying her message to those who may not be familiar with the daily struggles of the sickle cell warriors, Magaji said: "We are warriors, not sicklers, what we need is empathy not sympathy; show us love and stop the discrimination and stigmatization. 

"We are going through a battle that hinders our day-to-day activities and can even make us depressed. 

"Support the warriors around you and know your genotype before saying yes to that amazing partner, and break the sickle cycle together."

Magaji further shared with AllNews Nigeria the inspiring experience of how the sickle cell community has come together to provide support and raise awareness to the public. 

"There are thousands of happy and inspiring stories to share honestly.

"One of the things I’m so glad about is how whenever a warrior in need of blood, whichever local government, state or country he or she is, by just coming online to appeal for donors on our social media pages, you easily find a match who will donate freely and you have saved the person's life and reduced the financial burden. 

"Also warriors on hospital admission who need financial help, funds are being raised for them. 

"In these support groups, it’s people who understand your pain and will be there for you in that every stage of life you are.

"We have seen warriors who committed suicide due to depression and complications or financial burdens. 

"But with the help of such networks, the number has reduced and warriors are coming out of their shells and living happily."

She further revealed the key steps to be taken to enhance support and understanding for the sickle cell warriors. 

Magaji stressed the need for the government to make genotype tests compulsory and free like in the case of HIV and tuberculosis. 

She equally urged for the adequate funding of the support groups and awareness campaigns to keep the public informed.

"Our National health insurance scheme should cover major illnesses like sickle cell anaemia to ease the financial burdens.

"90% of sickle cell warriors are living beyond the means of the standard life of living. Sickle cell centres should be established across the tertiary and primary health care services.

"If HIV AIDS drugs and condoms can be given freely, then sickle cell drugs shouldn’t be left out; they should be free or subsidized to make them affordable to people. 

"Autism, Albino, etc. are recognized and given special attention by the Nigerian Government but why is sickle cell excluded?

"June 19 is World Sickle Cell Day and September is Sickle Cell Awareness Month as it is by the World Health Organization, but the government of Nigeria does nothing about it. 

"If you see any sickle cell activity going on, know that they are mostly NGOs or individually organized by warriors," she added.

When asked how individuals without sickle cell disorder could actively contribute to building a more supportive environment for those living with the condition, she explained that there was the need to give them jobs when they sought them.

"You can support warriors emotionally, and financially, embarking on awareness campaigns, funding, and ending the stigmatization of warriors in terms of work or marriage.

"Warriors are mostly rejected after submitting their medical certificate of fitness in search of a job; they see warriors as liabilities and believe you are always sick, won’t be up to the task, and even in terms of marriage. 

"This adds to the biggest challenges faced by many warriors including workable and marriageable age. Special places and slots or percentages should be allocated to sickle cell warriors by the government for work. 

"We are warriors, not sicklers, stop the discrimination and stigmatization!"

Magaji's concluding words to those willing to risk marriage, with both having AS genotype, were emphatic on making a responsible decision not detrimental to their unborn children.

"The big question is DO YOU KNOW YOUR GENOTYPE? Love isn’t worth it when your child has to bear the pain of your negligence.

"Sickle cell anaemia is a lifetime illness, love will fade and leave you with finances day in and day out of the hospital.

"You as a mother with the sole responsibility of being with the kids will be left alone at the end in and out of hospital with your baby while the man can add three more AA wives or even mistresses.

"The burden will end on you; make the right decision; know your genotype before saying yes to that partner. 

"Religiously, any act of hardship or pain intentionally imposed on any human, be it your child or neighbour will be judged accordingly in the hereafter!"

Meanwhile, medical doctors who spoke to AllNews Nigeria revealed that there has been an improvement in the level of awareness of the disorder.

Dr Muhammad Atiku of the Aminu Kano Teaching Hospital in Kano State shared, "With the advancement in medical practice and health education, our community is well educated about sickle cell disease, and measures to reduce the rate are being implemented."

Also, Dr Saifullahi Ibrahim Jumare from Kaduna State had the following words to say: "There is a massive improvement in the awareness of sickle cell disease compared to 10 years back because almost seven out of every 10 couples do premarital screening which involves genotype and other tests."

While Jumare said he has no knowledge of the availability of a support group or initiatives actively working to support the sickle cell warriors, Atiku revealed that there were many organizations. 

"We have many organisations, including NGOs that are currently working to reduce the rate and support the community," he said.

On his experience of a sickle cell warrior that has remained vivid in his memory, Dr Atiku said: "We had a mother that was named 'Maman Sickler'. 

"She had seven children with sickle cell disease and every week you will see her battling with one or two of the children in the hospital. In the end, we lost four of them."

On his part, Dr Jumare disclosed: "There was this patient I had who was admitted for crises. The father wasn’t available throughout her admission and the mother was not financially stable.

"During her admission, her brother also got admitted on account of crises again; the mother couldn’t afford to pay for their treatment."

Atiku further advised those willing to risk marrying, with both having AS genotype, to avoid it to safeguard their future.

Meanwhile, in his submission, Jumare who was also against the decision stated, "Honestly it’s not worth it because the pain of seeing your child in recurrent pains is the worst kind of thing to experience. 

"You just need to see one sickle cell child in crisis to understand that honestly!"

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