CONTRARY to the belief that sickle cell patients do not exceed certain age, founder of Sickle Cell Advocacy and Management Initiative (SAMI), Toyin Adeshola has advised people living with Sickle Cell Disorder (SCD) to live beyond their condition , stop thinking that they will die and live a fulfilled life.
Adeshola who is also the chairman, Coalition of Sickle Cell Non-Governmental Organisations in Nigeria, lamented that many people suffering from Sickle Cell Disorder limited themselves and deliberately refused to live life to the fullest because they felt they would die anyway.
In a chat, Adeshola said that many people in Nigeria especially people suffering from the condition are ignorant about the disease
“Many of them limit themselves and deliberately refuse to live life to the fullest because they feel they will die anyway. Even some parents and relatives are ignorant of how to help manage the condition, ” she said.
According to Adeshola, being a carrier of the ‘SS’ genotype is not a death sentence, with adequate management and positive mindset, the patient could live long.
“Nobody is born by accident, there is actually a purpose for your life, live your dream, make the best of it and stop holding on to bitterness and negative thoughts, it doesn’t help or move your life forward”, she said.
She noted that, “The fact that you are a carrier of ‘SS’ genotype is not the end of the world, learn to manage your disorder and health with a positive mindset. There are people with the disorder in the police force, some are playing soccer and doing all sorts. But if you allow your condition to dictate your life, you will never amount to anything.”
She encouraged the patients saying, “I have been living with SCD for over 50 years (I’m 54 now) of my life and I would not have had a chance at living; painful though it might have been, but it has been a good life, even with sickle cell disorder.”
“I decided to launch the initiative in 2005 so I can be an advocate and help people with sickle cell know that they can live beyond their condition rather than allow the disorder control or limit their lives, she said.
“Live your life, go for regular checkups, eat balanced diets, have adequate bed rests and adopt sound hygienic practices, so as to enable you manage the disorder effectively and live longer,” she added.
She also urged intending couples to go for medical test to confirm their genotype before marriage to rule out the possibility of having a child with SCD and avoid financial, emotional, physical and psychological pressure that came with the disorder.
Adeshola warned, “SCD creates conflict in marriage because parents and relatives are worried about the child’s health, the financial burden and a whole lot of challenges involved. Many parents tell their children that they have a particular genotype, may be ‘AA’, and these children grow up holding on to their parent’s words that they are AA, without doing the test again to be sure”.
“She observed that most times, when they get married, they will now realise that they were given a wrong genotype all along. “This is why you need to do the test more than once to ascertain your right genotype,” she said. She called on the Federal Government to tackle sickle cell disease seriously like other life-threatening diseases.