medical illustration of the effects of sickle cell anemia

SICKLE CELL A MOVING PHARMACY

Sickle cell anemia is a genetic disorder affecting millions of people around the world, It is caused by a mutation in the heamoglobin gene which leads to the production of abnormal heamoglobin molecules. The molecules are rigid and crescent in shape, these molecules obstruct blood flow by blocking the blood vessels among other problems. The disorder is an inherited disorder when both parents are carriers of sickle cell patients.

At a certain time, babies born with sickle cell could rarely live beyond five years, this is because they have underdeveloped body system and their body can’t stand the extra pressure as many factors can trigger a crisis like Cold, lack of oxygen, an illment can trigger a crisis in a patient.

A warrior patient who has been diagnosed with the disorder since childhood tells us what it is like living with the disorder.

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A talk with Remilekun Akinyemi aged 54 years sheds more light on the disorder because the best way to learn about something is through someone who has lived through it.

Tell us about yourself.

~My name is Remilekun Mawasola, I’m 54 years old with genotype HBSS.

How did you know you have sickle cell anemia

~I was diagnosed with the disorder when I was about six months old according to my mom, my symptoms included frequent crying in the night, I wouldn’t play with anyone and when spoken to, I will groan and scream, this led to our frequent visits to the hospital which eventually led to the diagnosis.

What was it like growing up with sickle cell anemia?

~It has not been easy for me but I have managed to scale through with the help of God.

Sickle cell anemia warrior
Sickle cell anemia warrior

Have you faced any challenges due to sickle cell?

~Yes, I have faced a lot of challenges, I was stigmatized, I heard alot of unpleasant comments about me, during a crisis, once during a crisis, I overhead someone calling me an ogbanje, that I should be thrown away because I’m an ogbanje.

As a child, did you have any expectations of the future?

~As a child, I have always wanted to be a journalist, I will always look at them on the TV station ‘NTA’, because that was the only tv station then, I even told my parents that i will be a journalist, I would be part of those casting the news.

Were you able to achieve that?

~No, but I went to school, while growing up my mind changed and I went for sciences not journalism again, I studied computer science at the University of Lagos.

Asides sickle cell anemia,are there any health challenges you faced?

~Yes, I was diagnosed with AVN about 27 years ago after I gave birth to my first child, it was initially at the left stage then it proceeded to the right stage. I was having both AVN issues, currently am battling with a masculine exclusives of the second leg after I had surgery for the first leg. I am also having issues with my organs, because as an SS patient, with age, you tend to have organ issues.

I have been diagnosed with kidney stone, ovarian cyst, kidney failure, hole in the ribs, I also have heavy hand, I can’t lift my hand up beyond my head because it will be very painful.

How was your relationship with others, you mentioned you have a daughter, how was your relationship with the father?

~Sickle cell impacts relationship when the partner has inception about the disease. I thank God I had a very good relationship, even though he is late, I gave birth to two children. Asides him, there was no other good relationship. Back then, if a man hear that you are an SS patient, they will flee. Some friends and neighbors understands while some don’t, some will even tag you as someone they don’t want to have anything to do with.

How was it like giving birth?

~Hard labour with crisis, I thank God for good hands from the doctors.When I was giving birth, I had like four or five doctors surrounding me in the labour room. It’s not easy to give birth, but to make it easier, we have to constantly be in the hospital. I was placed on a two months admission to rest before giving birth. I had my second child about 10 years after the first one, so you can see the age gap.

It is more common now to see warriors giving birth with two or three years interval, but then again, the sickle cell pain differs, some are severe, others are not, so when I see such woman I ask “don’t they feel the pain?

After I gave birth, I went through transitions again, I was always in the hospital. Labour is painful, sickle cell is more painful, so adding the two, it was not easy.

How do you support yourself, what source of livelihood do you have?

~I sell drinks but because of the leg, I use crutches so I don’t go to shop and when I started having issues, I had to stop because its stress inducing. I do come back home very tired that I can’t even get up, so presently, I am partially not doing anything because of my ailments.

So how do you get by as a sickle cell warrior?

~We used to beg for funds, as an SS patient, there are times when you will have surgery and the surgery cost about three million, it’s quite much and Nigeria as a place don’t really care for us, even if you post about it, the turn up is very poor.

What should be done to help ease that side for sickle cell warriors?

~The only way people can help us is to build a website in terms of financial need, for instance I want to have a surgery, I have AVN, I have another for the belly and it cost much so having a website that you can go to for such needs will be of help because when you repeatedly go to the same people for help, they get tired.

What can the society do as a way of helping warriors?

~The society should accept us, they should not stigmatize us, sickle cell is not widely spread, people don’t know the pain we go through. An SS patient can testify that we go through pain everyday, when we sleep and wake up, we go through pain, we just manage it. This is also the more reason why we take our drugs everyday to get relieve and live normally.
The moment you are diagnosed with AVN of the leg, your movement is limited because it is very painful, So I beg the society to be of help because it is not easy, we go through a lot of pains, I give it up to nurses and caregiver’s, they are really doing a good job, a great job.

How do you manage your spiritual life?

~We go to pray everyday, infact some don’t make it when they are in crisis so we pray everyday. Recently, an SS patient died, it could probably be due to frustration or lack of money for treatment or even chest pain, I have experienced chest pain alot, it’s very bad that if you get to the hospital, sometimes if not careful, you won’t make it.

What are your thoughts on sickle cell warriors?

~Since sickle cell is not a deadly disease, it is not a death sentence, I am 54 years and there are sickle cell patients older than me.

What are your advice to sickle cell warriors?

~They should manage their health and believe they can do it because there is nothing God cannot do. Though sickle cell may not allow you to have what you want, take me for example when I was much younger, I wanted to be a journalist but it’s not so today, I couldn’t even jump and play very well because the next day my body won’t feel the same.

Don’t be lazy because of sickle cell, when I was not having leg pain, I used to go out and meet friends, and till date, I still move around, even with the organ issues. Encourage yourself, believe in yourself and God will do the rest.

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Sickle cell disease is a serious and complex condition that requires ongoing treatment and management by staying informed and working closely with health care professionals. People with the disease can take big steps inorder to manage it and live healthy lives.

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