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Isata Lakoh – The Most Important Day

Isata Lakoh

Isata Lakoh – The Most Important Day

The most important day of my life is the day my parents explained the essence of the pain I have gone through majority of my life. Around the age of seven, I was slowly being informed about what made me different from the rest.
The very beginning of any child’s existence would have to be a joyful and exciting day for any parent. Little did my parents know that there was something not quite right. By the time I was four years old, my parents came upon a baffling discovery about me but they did not bother to tell me just yet about what was going on. After all, I was still just a child and I would not be able to make sense of what my parents were trying to say at the time.

At the age of seven, I started to wonder about myself pondering why I have to live life in a specific way. It was a lot different from the way other people lived their lives that’s for sure. I felt like a complete outsider. Almost like a fruit loop in a world of cheerios. One day, I decided to take action and ask my parents about myself. As expected from a curious child, I began to pound my parents with questions such as; “Why do I have to take medicine?” or “How come I can’t go swimming in the summer time?” even “Why do I go to the hospital a lot?”

That is when my parents came clean and explained to me that I have an ailment called Sickle Cell Anemia/Disease (SC). Sickle Cell is a blood disorder that affects the hemoglobin, the molecule in red blood cells that delivers oxygen to other cells throughout the body. It is a hereditary disease so each of my parents has 50% of the disease which is called the traits. Luckily for them it does not affect them nor does it affect any of my siblings. I suppose I ended up being the unlucky one unable to dodge the bullet. Children who have sickle cell feel pain in various areas of their bodies when blood vessels get clogged up with ‘sickle’ cells. The pain can last for a short amount of time or several days. It might hurt a little bit or a lot. When this occurs it is called a sickle cell crisis. (Crisis referring to time of trouble). Of course, with me still being a child at this time, it was a little too much to take in all at once. But I knew it was not good news at all. I can only imagine how saddened my parents were when they first discovered that I was diagnosed with this disease. So should I be saddened too?

As I grew older, I started to gain more knowledge about what I have. Everything started to make sense. But even at that, it is challenging to live life at times with the pain that occurs now and then. Having Sickle Cell can even interfere with my schooling due to frequent hospitalization and I find it very difficult to catch with school work and be on track. The question “Why me?” Was a frequent thought in my mind. This is especially when I was going into crisis. But now, I don’t say such things anymore. I know that having Sickle Cell is something I am going to have to live with for the rest of my life and there is nothing I can do to stop it or make it go away.

At this point of my life, I am learning new things about my ailment and what I can do to control it in any way possible. About a few years ago there has been a new medication introduced called hydroxyurea (HI-DROX-EE-U- REE-A). It is a medication that is taken according to weight and it is suppose to minimize the amount of crisis I have to avoid going to the hospital frequently. Every month I go to a walk-in clinic to get blood work done since I am on this medication. The reason I do that is to ensure that I am taking my medication accordingly and so that the doctors will know how effectively my body reacts to the medication. Having sickle cell does restrict me from doing many things. I cannot go swimming in the summer time because the water is too cold for me which would make me go into a crisis. I have to dress 10 times warmer in the winter time just so my body can preserve heat. Also, I cannot participate in any strenuous physical activity or else my body will give out and trigger pain. There are many things that others do that I wish I could do but I know it is not possible. I also know that it is for my own good so it does not bother much.

Despite all the trials and tribulations I go through, I am still grateful for the fact that my parents told me what was going on with me. From then on, it made me more certain, aware, and mindful of myself. There are many other people in the world that have bigger problems than I do. I am not going to dwell on myself as if it is the end of the world. I am thankful for being who I am and I know that I can be all that I can be if I put my mind to it. I know that I cannot change what I have but I can stay positive and look forward to brighter days and a brighter future.

 

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Isata Lakoh – The Most Important Day - overview

Summary: Isata shares her memories of the most important day that changed her life, finding out she had SCD.

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Sickle Cell Warrior

Sickle Cell Warrior

Tosin is dedicated to perpetuating healthy and positive messages about sickle cell. Although sickle cell is a subject often taboo in the communities this condition is most prevalent, Tosin's message is that sickle cell is not something to be ashamed of and you can live a rich and fulfilling life with sickle cell. Sickle cell warriors are the most amazing people in the world, with a great fortitude for compassion, willpower and strength.

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1 Comment

  1. Temmi
    Temmi May 29, 14:19

    Hi, Thank you for sharing your story. I can related to so many of the things you said. especially with the swimming. I am always the one on the side line watching everyone play and have fun, wondering why I can’t do that and so many other things.
    I am so glad your parents told you at such an early age to help you better understand this condition of ours. I didn’t learn about mine until a bit much later, age 11. I grew up in Nigeria so having sickle cell is not something our parents like to golorify, so to say, despite so many children being born with it.

    Regardless you keep being positive and keep going strong, it might limit us but it won’t cripple us. You are capable!

    I pray you have more and more brighter days and a very very bright future fellow warrior.
    keep fighting the good fight and know you are not alone. You have a whole army who understand and are with you in spirit and prayer always!
    Stay bless, the lord is your strength!
    Love the outfit by the way you beautiful gladiator!

    Ps: just because there are others with bigger illnesses/problems doesn’t make your struggles any smaller or insignificant.

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