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SICKLE CELL: Winning the “War” as Warriors

*The experts Perspective

-By Hauwa Muhammad Lawal

Sickle cell disease (SCD) is an inherited blood disorder characterized by clinical heterogeneity that may be influenced by environmental factors, ethnicity, race, social and economic factors as well as genetic and epigenetic factors.

Meanwhile, experts in the medical sector have said that the war against sickle cell diseases can be worn by patients if they can abide by certain rules and regulations especially as it relates to their health status.

VALUECHAIN in an exclusive interview with Dr. Flourence Ikenne Ifeanyi, a medical lab Scientist at University of Abuja Teaching Hospital and Bukola Bolarinwa, a lawyer and President of the Sickle Cell Aid Foundation jointly affirmed that knowing oneself and living a healthy lifestyle can determine how long a “warrior” can live.

According to Dr. Ifeanyi, a healthy lifestyle should be inculcated by carriers, malaria and other related disease should be avoided because ones a sickle cell disease patient has malaria attack, it worsens the situation which brings down the immunity of the patient, thus, subjecting the patient to crisis.

Dr. Ifeanyi advised that patient must consistently use the insecticide treated net, eat food enriched with vitamins and visit the clinic even before crisis ocours.

“Warriors must not get exposed to malaria attacks, use insecticide treated mosquitoes net, because once a warrior has malaria, it worsens the situation which brings down the immunity of the patient and subjects the patient to crisis.”

She further advised that individual with AS genetic formation should not marry fellow AS, though enlightenment and sensitization is still on-going especially for people living in the northern part of Nigeria, but also posits that though patients are being stigmatized, they should still speak out about it and seek for help from medical experts though expensive, but not resort to using herbal concoction as done by many.

“I don’t advise people to use herbal concoction because they are not purified, they don’t have measurement or concentration, some of those things might affect the liver and kidney which may break down the health conditions of the patient which can worsen the situation or even lead to death, it is always better to use modern medication which is tested and trusted.”

On life span, she said naturally people die, irrespective of age or class, but the thing is that people look at sickle cell patients as people whose life span are short, but that’s not true, once you protect and preserve yourself, take the right medications and food, you will live a longer life, at least, the life of all belongs to God, we have had patients that have lived up to 60 years and above because they were careful about their health and were able to access what they need to protect themselves.

She added that as research and technological advancement to managing sickle cell diseases continue, definitely, one day the cure will be found.
Mrs. Bukola Bolarinwa on her part said sickle cell disease has not been a priority because it is a genetic disorder and there is an impression that because it can be prevented there should be more focus on avoidance and less focus on treatments.

“Understanding that sickle cell disease is a lifelong condition allows medical providers, caregivers and patients themselves to recognise that decisions that they take today will affect their care tomorrow.”

Mrs Bukola said in developed countries, the transition from paediatric care to adult care has received a lot of attention because better treatments have been focused on children while adults were left to fend for themselves, in adulthood there’s everyday challenges that are compounded by living with a chronic condition.

There are two main things that may seem contradictory. Firstly, that SCD is an extremely serious and dilapidating disease that completely takes over ones life.

“People who work and interact with people living with SCD must understand that it affects virtually every aspect of life. However, there is no need to treat people with sickle cell as if they are inferior, weak or unworthy. People with sickle cell are extremely capable and can live very full and active lives.

“Some of the most driven, intelligent and talented people I know are living and thriving with SCD.”

She advised that patients should know themselves. Firstly, it is KNOW YOURSELF. My parents used to drum this in me as an adolescent and it is only now that I truly understand the value.

Being able to know your limits, what works for your body, what triggers your pain and crisis is the best medicine in the world. I used to feel so much pressure to do things, especially socially and at work that would lead to crisis. The people who I was trying to please quickly move on while I am in pain for weeks after unnecessarily pushing myself.

Secondly, take care of yourself. I know this seems obvious, but a lot of people do not prioritise their health and wellbeing. If someone is selling clothes for N30,000 some warriors will rush to buy but an essential medicine that is half that price will be deemed too expensive! When I tell warriors to eat fruits everyday they say things like I do not like the taste of fruits! When you end up in hospital with an infection from weak immunity, you will have to like the taste of medicines instead!

These examples are to illustrate that warriors need to prioritise their own care above and beyond anything else.

Finally, half the battle is in the mind. It can be so easy to slip into depression and feeling helpless living with a lifelong chronic condition. I always use one of beneficiaries Abe as an example.

He is living with severe SCD complications with very little family support, but he never stops striving for treatments and to make something of himself. Having a positive outlook and refusing to feel defeated are the catalysts to living successfully with SCD.