LSCS creates safe space, advocates for sickle cell patients’ inclusion

Ayo Oladiran

With its innovative and creative way of making the struggle of students with sickle cell disease within the Lagos state university community bearable, Lagos state University Sickle Cell Society is helping patients to reduce the pain of Haemoglobin S (HbS) Disease through its safe space and advocacy initiative.

Timilehin Isholaoluwa is a sickle cell advocate, fighting for the inclusion of more sickle cell warriors, and an alumna of Lagos State University (LASU), Ojo. She has a first-hand experience of what it is like to be absent from school, have to write exams while having a crisis, and retake papers because her blood cells would not let her sit for exams when she should.

For her, school was not all she had hoped it would be because she spent half the time in the hospital. This sucked the fun out of the university experience and robbed her of participating in social activities like she wished.

Timilehin Isholaoluwa

“I could not socialize, I could not continue with a lot of things I got involved with on campus, because of my ill health. I was constantly in pain and there was always a lot going on with me. I really wish I was able to do a lot of things while in school without restrictions,” she told this reporter.

According to a report published by the National Library of Medicine (NLM), the world’s largest biomedical library, globally, majority of individuals living with Sickle Cell Disease (SCD) live in sub-Saharan Africa with Nigeria having the highest burden of the Sickle Cell Trait being present in about 25% of its population. SCD is a group of inherited blood cell disorders which affects hemoglobin, the protein that carries blood to all parts of the body, leading to constant pain and other complications.

It is no wonder that students in LASU living with this disease often desire a safe space and a community of people who can equally relate to their constant struggle and pain. This search brings them to the LASU Sickle Cell Society (LSCS) – A society which promises a safe haven for Sickle Cell warriors and advocates.

The birth of LSCS, a safe place for Sickle cell patients within LASU

Ayomide Durodola, a medical student set out on a search for SCD Advocacy groups on campus to be a part of in order to spread the word about the disease and save as many lives as possible but her search was fruitless. Her passion is first to enlighten other students so they are aware of their status on time. She recollected an acquaintance who did not know she was living with the disease on time until when she ran compulsory medical screening in school. It was in this journey that Ayomide’s dream for a society that advocates for  sickle cell warriors in LASU was born.

Ayomide Durodola

The founder of the LSCS realized that not many people(students) were aware they were living with this condition. This just made sense to her to promote genotype education and related campaigns among students. Within LASU community, the process of going through compulsory medical screening for new intakes in the school is very strenuous, many students do not complete it until much later,

Also “I found out that not so many students get to do their medical screening. Many students abandon the process until they are about to leave school before they do it”. Ayomide told this reporter. More so “I considered if we must stem the challenges of sickle cell disease occurrence especially among children and young people, time is now for such initiative”. Ayomide explained further

One other dimension to this initiative according to Ayomide is her determination to change the narrative

LSCS is also proof that one does not have to live with the Hbs to advocate for it as she is not one. In many occasions during LSCC campaigns, many are surprised that a non carrier is leading such advocacy

LSCS impact

Timilehin,while going through her challenges as undergraduate in LASU shared that she sought out the society and joined because she needed a place with persons who understand what she goes through daily and a shoulder to lean on in school for support.

“I joined LSCS because I was looking for a community of fellow warriors and I needed a safe space to express myself to people that truly understood what sickle cell is because they are also warriors” Tinilehin shared. 

She further expressed that the majority of the club’s activities allow other students with the same fate as well as experts (doctors, advocates) to talk to us to make life easy. It felt like they were trying to feed my curiosity because I had always wanted to know more about sickle cell,” she shared.

Similarly, Ifeoluwa Emmanuel a 400 level student of Dentistry shared that he joined the society to know more about it. In his words, “It is not every time you meet fellow warriors so I wanted where I could have people having the same issues as mine so we can relate and also to gain more insight on how to cope with the crisis.”

Struggle of a LASU undergraduate with sickle cell 

The average person without a sickle cell disease may not fully grasp the challenge of what sickle cell warriors have to go through. Especially if such a patient is a student. Being a sickle cell patient and also a student could really be demanding. Sickle cell warriors often miss classes and other activities when crises associated with the disease begin. Ifeoluwa believes that the disease is the main reason he is not able to give his best especially during exams.

“A particular crisis began two days before my exams commenced.  My health instability during that exam period cost me much back then,” Ifeoluwa shared.

Even though I struggled to write that particular exam after my medication, I went for hospital admission afterward. The crisis reduced my mental alertness and efficiency,” he said.

Another student, Eniola Aina, a 400 level Nursing student shared how her condition made her perform poorly in a course. About two days into the test, her crisis started and she ended up doing poorly in the test which she claimed was a result of the crisis.

“I fell sick on Sunday and got a bit better on Monday.  I had hoped my health would remain stable until the following Tuesday when I was supposed to write my test. Unfortunately, two hours before the test on Tuesday I had a health crisis accompanied with severe pain, became pale and started vomiting. 

Of course all my struggle to write the exams before going for hospital admission did not yield a commensurate mark after test scores were announced.

Sickle cell warrior’s advocacy and what LASU management can do

Given the experience of many students with sickle cell disease, LASU Sickle cell club has continued to advocate for reasonable accommodation of students who suffer crisis a few days to or during examination period.  This will reduce associated mental health challenges of fear of carrying over, repeating  courses or deferring a whole semester because of having a crisis around exam time.

LSCC is advocating for established policies which allow students with Hbs that have a crisis, especially a few days to or during exams time to write the same exam after the student is stabilized. Even if it means a different exam questions will be set for the Hbs student

“”No one says exam questions must be the  same to ensure fairness but making allowance for such resit  time will go a long way” Timilehin said

Because of the absence of such a policy for now, there were times a sickle cell patient, students within the LASU community, were absent from school for a whole semester; with no attendance, no mid semester test and no lectures. This often forced them to defer the semester

Ayomide, the founder of the LASU Sickle Cell Society believes that the university can make life easier for warriors in many ways. Firstly, she believes that  the management must enforce students to have their medical clearance done early, this would help with early detection and treatment of the disease.

Also to encourage more intake into the school system, a consideration for award of scholarships for sickle cell students will reduce cost of remaining in school as well as treating the disease. There is a need for a lecturer- student relation that is focused on proper understanding of challenges such students face, this will go a long way in making life easy.

#culled from www.nigeriagrassrootnews.com

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