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…Why my wife’s condition didn’t scare me –Husband
Amarachi Okeh
Mrs. Maria Akinfe is a sickle cell disease activist and manages ‘thrivingwithsicklecell’ – an advocacy page on Instagram. In this report, Maria alongside her husband, Mr. Babatunde Akinfe, shared how they found and are flourishing in love despite having to deal with the sickle cell challenge. AMARACHI OKEH reports
It wasn’t until her late teenage years that Mrs. Maria Akinfe got to know why her now late father always drove her to Lagos University Teaching Hospital for constant check-ups and treatment.
She said her late father had explained to her that she needed to join a sickle cell group so she could be able to take care of herself when he is not available.
“He told me that since I have grown up now, I have to learn to take care of myself because he won’t be there all the time to care for me.
“So, I joined the club, got to know how to take care of myself and other things as a person living with sickle cell,” she recalled.
Mary, however, said she never considered the disease a barrier to her love life, even though she took a personal decision to stay away from relationships.
She, nevertheless, noted that she had also decided to be a little careful as her mother was always worried about her love life and cautioned her against getting into any relationship with a man who is not having the AA genotype.
“She told me if I wanted to date anybody to the point that it leads to marriage, the person has to be AA. That was how she just put it.
“I was a bit concerned about that because I know she is worried about me. I asked myself, is it that I will go and be looking for an AA person to date all the time?”
She noted that while that valid worry was at the back of her mind, she wasn’t bothered about relationships at the time. She said that stayed away from dating largely out of her quest to avoid falling into the wrong hands.
She, however, disclosed that when she eventually met her husband, Mr. Babatunde Akinfe, and informed him that she has sickle cell, she was impressed that he was not discouraged about her genotype and really wanted the relationship.
Thankfully, Mr. Akinfe has the AA genotype and was thus suitable for her. The relationship blossomed and led to a loving marriage. They have been married for 14 years and are blessed with two children.
Marry is not just a sickle cell warrior, she is also dedicated to enlightening and educating other Nigerians living with the health condition on how to live the best life possible despite having to constantly battle the sickle cell disease.
She now runs a sickle cell advocacy page – @thrivingwithsicklecell on Instagram.
Through the platform, Mary said, she now educates people living with sickle cell on how to thrive with the disease.
Mrs. Akinfe, who is also a travel management expert, disclosed that she has also educated her children on how to be of assistance to her in the event of a crisis when their father is not available.
Speaking with PUNCH Healthwise, Mary’s husband, Mr. Babatunde Akinfe, said even though he knew his wife had sickle cell disease while they were courting, he was determined to ensure that nothing, no matter how scary, would come in between their union.
Their marriage, he said, was God-ordained and the wife agreed.
Speaking further with PUNCH HealthWise, Mr. Akinfe said that even though his genotype is AA, he didn’t grow up knowing anyone with sickle cell, adding that the earliest knowledge he has about the condition was during biology class in secondary school. “That was the closest introduction and knowledge I had on the condition,” he said.
He disclosed that his wife was the first person he met living with the condition.
“When we became friends and I knew I wanted to marry her, the only thing I asked when I got to know about her SS genotype was what does the bible say about it? God in the Book of Acts said He made every one of us one blood, every nation of men. So my first thought is to ask if we are all made from one blood, what happened to some people’s blood along the line?
“I believe that everything good comes from God. That was my foundational spiritual belief. As a result of that, I have never had any fear or issue with the condition.
“Marrying her was not an issue at all, even when she informed me that she had sickle cell. My faith played a major role in the conviction that she is my wife and we believe that our marriage was God ordained.
Despite his limited knowledge of the condition then, Mr. Akinfe said she had set his mind on marrying her and was ready to sail through the waves of challenges the diseases might bring.
He said, “I knew God brought me into the marriage and I felt like since I’m a perfect match when it comes to genotype issues if any other person had issues with that it shouldn’t be a concern alright”.
He stated that his choice was also accepted and supported by his family.
Having been married for almost 14 years now, Mr. Akinfe said they have dealt with the sickle cell challenge together.
He said it is always painful watching his wife go through a sickle cell crisis and often wish he could swap her pain.
He, however, noted that even though he sometimes couldn’t do much to take the pain away, he is never afraid of facing the challenge.
He said he has over the years quickly learned how to assist and help manage the pain and knows exactly what to do at every particular time.
“When she is having a crisis, especially at night, the first question I ask is how is the pain? I will say rate the pain between 0 to 10. There are some situations in that we probably just need to call a nurse friend and then administer some painkillers or just wait till daybreak to see if it will subside. I have never really been scared.
“I feel like I can manage the situation. Unfortunately, we can’t swap the pain. I would have preferred to bear it for her even though I don’t know the intensity of the pain.
“However, all I can do is to make sure that I take care of her by managing the pain at home or going to the clinic, especially when it is beyond what we can manage at home. Once she tells me the stage of the pain, I know what I need to do.”
Mr. Akinfe said while accessing health care for the management of her wife’s condition has been easy due to the health insurance coverage he enrolled on, he often wonders how others who cannot afford such health insurance could cope with sickle cell.
The government, he pleaded, should subsidise the medication for all persons in the country living with sickle cell.
“The government needs to look into this. There are a lot of funds that we can actually spread across some geopolitical zones for this.”
He also bemoaned the lack of needed medical equipment for the management of sickle cell in public hospitals.
“We talk about leg cancer. Early detection is very critical but the equipment that can help detect it early is not everywhere and some people’s legs have been amputated because they were not detected as early as possible.
“So, the more we begin to have the needed equipment, the better so that more people can access but care they need. This should not just be available but should also be affordable,” he said.
Prevalence of sickle cell in Nigeria
According to a study titled ‘Advancing Healthcare Outcomes for Sickle Cell Disease in Nigeria Using Mobile Health Tools’, an estimated 150,000 babies are born annually in Nigeria with Sickle Cell Disease, with between 70 to 90 per cent of the babies dying before age five.
According to The Lancet, Nigeria is probably the country with the world’s largest population of individuals with sickle cell disease. Sickle cell disease is recognised as a priority non-communicable disease, adding that the Nigerian government developed guidelines for its prevention and control in 2013.
Be prepared to provide sickle cell care, if you mary a person with the condition –Expert
Speaking with our correspondent, a professor of haematology and blood transfusion at the Lagos University Teaching Hospital, Sulaimon Akanmu said the only thing a person who intends to marry a person living with sickle cell should do is be prepared to care for such a person.
The professor equally explained that not everyone living with sickle cell is the same, nor have the same symptoms. They also do not suffer crises the same way or at the same level each time.
Akanmu, who is a professor at the college of medicine, University of Lagos said,
“We have categories of patients with sickle cell anaemia. Those who have frequent sickle cell crisis and those who hardly ever have crises.
“We have extreme cases that are near normal and extreme cases that are in and out of the hospital so if you get married to an individual that is in and out of the hospital, maybe you are the angel that God has sent to that individual to continue to provide that person with the care they need.”
Akanmu also noted that marriage is one of the ways of breaking the stigmatisation that people living with sickle cell suffer, adding that there’s no difference between a person living with sickle and us.
He, however, added that it is important for any person who wishes to marry another person with sickle cell to learn how to adequately care for them.
“The person must be aware of the factors that precipitate sickle cell crisis. Extreme heat is one of them. In extreme heat, persons living with sickle cell often lose a lot of bodily fluids, the blood becomes concentrated and of course, the end result is that the red cells become a bit more thickened that it can easily sickle and you go into painful crisis
“Extreme cold is another problem. This is because the blood vessels become constricted and the capillaries become narrow thus the ability of the sickle cell to navigate through narrow passages becomes a bit of a challenge and the individual can go into a painful crisis. You must ensure that this does not happen,” Prof. Akanmu said.
He disclosed further that infections, especially malaria can also be a problem as well as stress in whatever form, noting that such should be avoided to prevent sickle cell crisis.
Prof. Akanmu also stressed that it is important for a person living with sickle cell not to contemplate marrying a carrier of the gene, warning that such a union would put the future of their children at risk.
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