Sickle cell disorder patients, popularly known as “warriors”, have said that it was not a condition they would wish on their worst enemies, while soliciting empathy from government, medical experts and caregivers.
Speaking with Blueprint reporter on Saturday, during an event organised by the Beulah Sickle Cell Foundation to celebrate and reward warriors and caregivers, a 30-year-old warrior, Mr Tanimu Yusuf Ibrahim, who is also the founder/creative director of Taniart Concepts, lamented that warriors face a lot of stigmatization and discrimination from members of the public who do not understand their pains.
He said: “Many people don’t understand our pains as warriors. We are called warriors, instead of sickle cell patients, because we are fighters. We face a lot of challenges as warriors and we live everyday with pains and crises. What we deserve from members of the public is understanding, love and care. We are already passing through a lot and don’t deserve to be discriminated against, stigmatized and victimised as we encounter every other day.
“Sickle cell warriors are talented. We are determined and can do our best when we are not having crisis. Medical doctors, caregivers and the government should show us empathy, not sympathy. We deserve the best of medical care and not abuses, neglect and stigmatization. Warriors are usually very stubborn, but it is as a result of the knowledge that you don’t know or understand the pain we are passing through. A warrior in pain will speak emotionally, not logically, so we can be excused. I have lost a lot of friends to medical neglect, so hospitals should step up in taking care of people of our kind.”
Also speaking, a 33-year-old rap artist, motivational speaker and writer, Mr Japheth Ezekiel Makhibi, advised lovers to multiple-check their genotypes for compatibility before considering marriage in order to avoid bringing sickle cell disorder children into the world to suffer.
He said: “Today, I am not a graduate because of sickle cell disorder. I was doing well in the university, but while writing my project in 2014 as a 400 level student of psychology, I had a major crisis that prevented me from continuing with my edition. I was bed ridden for two years, I had a failed hip surgery and has been using crutches because of my medical condition as a warrior with leg ulcers. To the glory of God, I am still alive, but every day is a living hell. I can’t blame my parents for my condition because science was not popular when they got married in the 70’s.
“However, I will advise lovers to check their genotypes in four or more labs to get the right result so that they don’t bring in children to suffer like I am suffering as a warrior. Our compensation as warriors is that we are very intelligent, smart and naturally talented, but we are limited by physical activities as we cannot undertake rigorous tasks. The mistakes our parents made out of ignorance can be avoided by today lovers if they can check their genotypes and forget marriage if their genotypes are not compatible. That will save them a lot of agony.”
Speaking earlier, the founder of Beulah Sickle Cell Foundation, Josephine Olunaike, who is also a warrior, said her foundation holds monthly clinic for warriors, where they are given routine medications, with the event serving as flag off of free leg ulcer treatment for warriors by the foundation in partnership with Gwagwalada hospital.
“Stigmatisation of warriors has been going on for time immemorial. A lot of warriors were beaten, taking to spiritual homes on the claim that sickle cell was spiritual. In some homes, even if a child is AA, the parents will kick against him or her wanting to marry SS or a warrior, on the accusation that warriors carry death around. Some are denied employment, even when they are qualified. So, it is an issue at home or society.
“At Beulah Sickle Cell Foundation, we give warriors a sense of belonging. We encourage them. For instance, the event today is to appreciate and reward warriors, caregivers and volunteers. We also hope for government to look into providing health insurance for warriors to improve our condition of living.”
