By: Mustapha Usman
30-year-old Alex Ozo was born with sickle cell disease (SCD). All his life, he had suffered countless episodes of pain known as sickle cell crisis but in 2005, at age 13, he suffered a crisis attack that left him paralysed for several months.
The John Hopkins website defines sickle cell disease as a blood disorder in which the hemoglobin is damaged and can’t carry oxygen to the tissues. For someone like Ozo, this means periodically, his red blood cells become hard and sticky, clogging his blood flow, and often resulting in pain or other serious problems such as infection or acute chest syndrome.
In 2005, when he suffered the crisis attack that led to him being immobile, he described it as a horrifying experience for him and his mother. On that day, he had suffered another crisis episode and tried convincing his mother to let him die.
“The hospital we were using then was at Yaba (in Lagos), the pain that day was so much that I cried to my mum to let me die. Never seen her cry as much as she did that day”.
Resolute in her conviction to save her son, Idayat Ozo (Alex’s mother), took him to the hospital for treatment. For three months, Ozo received three separate injections on a daily basis until a nurse ‘mistakenly’ punctured a muscle in his butt that left his legs paralysed.
He was later referred to another hospital, Printing and Minting hospital, also in Yaba area of Lagos, to treat his hurt legs.
“That hospital was a long distance from home. It was financially and physically draining for my parents then. I don’t wish that experience on my worst enemy,” Ozo said.
Ozo’s teenage years were bedeviled with frequent visits to the hospital but he describes his experience of continually fighting for his life as minor compared to his struggle to be a functional member of the Nigerian society.
Now an adult, Ozo’s struggles have taken a new shape.
“Stigmatization kills faster, not SCD. Most of these warriors get tired of discrimination and sometimes contemplate suicide,” Kemisola Adepoju, a health expert, said in an interview.
“Since I finished the mandatory NYSC in 2015, things have been very hard. When I attend job interviews, I notice employers, out of concern, reject me because of my frail body,” Ozo said.
According to a report published on the National Library of Medicine website, young adults with sickle cell disease (SCD) are at risk for health-related stigmatization due to the many challenges of the disease. The report which further defines health-related stigma as a form of devaluation, judgment, or social disqualification of individuals, adds that it has become a major public health issue.
Nigeria has been reported as the epicentre of people living with sickle cell disease in the world, in fact, a study published on thelancet.com shows that “Nigeria has the highest birth prevalence of sickle cell disease in the world, with an estimated 150,000 annual births of babies with sickle cell anaemia, the most common form of sickle cell disease.”
Despite growing concerns for health-related stigmatization, very little intervention is created (on a large scale) to support victims. However, Sickle Cell Aid Foundation (SCAF), a non-profit based in Nigeria, has taken a unique approach towards tackling the emerging public health issue.
With an overarching mission to help increase awareness on Sickle Cell Disorder (SCD), SCAF, created a handbook and photo booklet designed to educate secondary school children across Nigeria on genetic compatibility, inclusive environment and how to be first responders to fellow students living with SCD.
Elmer Aluge, President of SCAF, posits that this approach helps to educate school children and arrest ignorance that births stigmatization among peers.
Although the handbook can be used to train students from any school, SCAF has focused on educating students in public schools, solely because there’s a belief that stigmatization of SCD warriors is common in public schools. While there is no evidence backing such belief, the result of targeting students in these schools has become enough justification. So far, over 1000 copies of the handbook have been distributed in 15 schools across Abuja, Kano and Lagos.
Books on genetic compatibility and inclusion would help reform the level of stigmatization in the society especially in schools according to Prof Rotimi Folorunsho, who teaches psychology and human development studies in University of Ibadan.
“Every book provides information, and information provides reformation. Because it’s when you’re informed that you can be reformed. Such a handbook would surely inform the students about steps to follow as they grow older,” Folorunsho said.
To augment the distribution of handbooks, SCAF also developed an Adopt a Warrior initiative, a fundraising drive that ensures students are supported with resources to stay in school.
“School is where a lot of bias can be broken. If they feel adequate from when they are small and they are learning, they are less likely to be stigmatized or disadvantaged in adulthood, Aluge said, describing the targeted impact.
Not without Challenges
While the sensitization is meant to ease the burden on sickle cell carriers, there are challenges hindering the group’s activities and growth, often stemming from deep-rooted, negative views of the organization from the parents in the northern part of the country. According to Ayo, a program director of SCAF, the group did face different hitches ranging from parents/communities’ acceptance to bureaucracy.
“By Bureaucracy, I mean the government and school’s policy. We had to give the handbook to the Kano ministry of education to review it after several meetings before we were able to get approval to carry on with the sensitization. It took us about six months to get approval,” Ayo said
Ayo stressed that language barrier would have been another biggest challenge in executing the project, but through their funding partners, they were able to transcribe the handbook to local language (Hausa) for easy communication.
Elmer Aluge says religious beliefs are another limitation SCAF faced in discharging the project.
“We faced challenges with the parents of children who felt it was against the popular religion to teach about accepting a disease. To tackle this, we had to train the teachers first who then sensitized the parents on the advantages” she said.
Funding is another challenge, Elmer says “Although we do have funding for some of these projects, funding is still a challenge for every NGO. it’s something we need to keep on with the project.”
Can the approach really change the narrative?
Solving the issue of stigmatization amongst students and also putting the teachers and the guidance in the position of first responders through writings and advocacies have been one of the best ways in addressing the social problem according to studies.
Similar approach has been applied in developed countries and it has reduced the level of stigmatization and also made the teachers and the students the first responders to students suffering from this genetic disease.
In the United States (US), with approximately 70,000 to 100,000 people living with sickle cell, there have been notable developments towards identifying roles for teachers, other school staff and parents/caregivers to support students living with SCD.
An instance of a similar approach in the US is publication of the Tips for Supporting Students with Sickle Cell Disease. The handbook is also made accessible to the masses online. The purpose according to the publisher: “We identify ways SCD may impact a student’s daily life and describe how school staff can make accommodations (i.e., adjustments to the classroom setting or instruction) to meet the needs of children who may experience health problems associated with SCD during the school day. The content covers information on ways SCD might impact education outcomes and information about pain, stroke, and symptoms associated with SCD that school personnel should know.”
The handbook further enumerated how teachers and students should plan ahead for any emergency needs that the carriers may need in case he/she faces seizure. It identified the ‘pain episode’, developing a care plan for them and getting them prepared for the likely questions parents/guidance may ask them.
Another publication, Educator’s guide to sickle cell and school published by children mercy’s hospital and clinics with support of the Missouri Department of Health and Senior Service in United State, exposed teachers and students to how they can assist sickle cell carriers out of the menace of stigmatization instead of subjecting them to constant abuse in the school.
“It is our hope that this book will provide insight and/or information to schools that educate students with sickle cell disease,” the publication stated.
It further stated that “many students enjoy academics and go on to graduate, attend college, and pursue a career or vocation. Your role as a teacher, mentor, or friend will assist the student in becoming a successful adult. With your support, the information in this booklet will help a student with sickle cell disease succeed”
Over the years, Nigerian scholars have also made an effort to sensitize the public about sickle cell disease and also educate the guardians about how to take proper care of the carriers through writing of books on genetic compatibility and stigmatization.
Although the reading culture has been reduced and substituted with social media, politics and games, books on awareness and sensitization have reduced stigmatization and the rate by which people go into genetically incompatible relationships, according to Prof Rotimi Folorunsho.
According to the former vice-chancellor of the University of Ibadan, Prof Isaac F. Adewole, in the book-‘A PARENT HANDBOOK FOR SICKLE CELL DISEASE IN NIGERIA’ authored by Children’s Hospital—Oakland Sickle Cell Centre, there was a popular belief that the sickle cells carriers were born to die.
“During my childhood days, I have seen many children both within and outside my locality that may have had SCD but I did not know the diagnosis then. They had all the physical characteristics of SCD but we called them “ABIKU” literally translating to “BORN TO DIE.”
He however stressed that the: “Two Parent Handbooks on Sickle Cell Disease (SCD) on children age 0-6, and 6-18 years will save thousands of children’s lives in Africa.
**Editor’s note: Some name have been changed to protect the identity of victims**
“This story has been supported by Nigeria Health Watch through the Solutions Journalism Network, a nonprofit organization dedicated to rigorous and compelling reporting about responses to social problems, solutionsjournalism.org”