Sickle Cell’s Prognosis Taught Me to Live with Purpose

Sickle Cell’s Prognosis Taught Me to Live with Purpose
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We were nearing the end of a biology lesson. In an attempt to excite the class for the next lesson, my teacher put up a slide that read, “Why people with sickle cell die young.”

I froze. I knew that the topic would come up eventually, but I did not expect my teacher to take that approach. But I also knew he meant no harm. I mean, what were the chances that the only black girl in the sixth form (12th grade) had sickle cell?

My teacher must have seen the blank expression on my face because he did some digging to find out if I had sickle cell. Once he had confirmed his suspicions, he called me over to ask how I was, how I thought he should approach the lesson, and if I minded letting my classmates know that I had the condition. I told him that he should continue with the lesson the way he had planned it and that I didn’t want to tell my classmates.

When the lesson finally came, I could tell that my teacher had significantly watered down the facts. He added a disclaimer to every symptom of sickle cell and changed his stance from patients with sickle cell dying young to, “With today’s modern medicine, sickle cell patients can have a typical life span.” That is true to some degree, but it’s not the case for everyone with sickle cell.

When I was about 10 or 11 years old, I spent some time researching sickle cell, including its symptoms, and what the diagnosis meant for me. Many websites said that people with sickle cell often have a shorter life expectancy, which didn’t mean anything to me at such a young age. I focused on the symptoms I had at the time, such as pain, jaundice, and fatigue.

I knew the facts, but the reality of it didn’t hit me until that biology lesson.

After the lesson, I learned through further research that the average life expectancy for people with sickle cell is around 40 to 60 years old. When I saw this number, my heart dropped. I questioned all the plans I had for my life. All I could think was, “Will I have enough time?”

There are people with sickle cell living well past the average life expectancy. The oldest person currently living with sickle cell, Asiata Onikoyi-Laguda, is 94. I understand that this is rare, but I know that to get to that point, I must do what I can to encourage and maintain good health. I plan to follow healthy habits such as drinking enough water, eating a balanced diet, and taking my medication. I am praying like Asiata to beat the odds.

My knowledge of that fact has encouraged me to live with more purpose. I have set many goals that I intend to accomplish. I won’t allow sickle cell to limit my potential. My outlook on life has become more focused. I know that with the right level of consistency and endurance, the sky is the limit for me.

***

Note: Sickle Cell Anemia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Anemia News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to sickle cell anemia.

Tito is a 23-year-old London-based tenancy manager and lover of life. For as long as she can remember, she’s had a passion for helping others. She writes to help others realize that sickle cell doesn’t need to define their entire identity.
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Tito is a 23-year-old London-based tenancy manager and lover of life. For as long as she can remember, she’s had a passion for helping others. She writes to help others realize that sickle cell doesn’t need to define their entire identity.
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16 comments

  1. Mensah Nimako George says:

    Thank you so much for helping people with sickle cell including me.
    My question is;what are you doing to help people with sickle cell in Africa, especially Ghana and its villages.

    • Tito Oye says:

      Hello Mensah,

      I’m happy to help!

      Seeing as I am from the UK, I have personally been focusing my efforts in the UK when it comes to raising awareness and supporting others with sickle cell.
      Do you know of any organisations in Ghana that do support people with sickle cell?

      • Benjamin says:

        There are not much organisations in Ghana. In Fact our government is not putting in much effort to combat the disease here in Ghana. We are all worried when it comes to this situations.

        Hope we can do more.

  2. Ari says:

    Hey thank you so much for this.I have sickle cell and I have a fear that I’ll die young and I’ll never get to experience nothing(I’m only 15).I like traveling but I hate medication because it’s like you need to travel with them and need to pay attention to how much you have and will it be enough.I want to move somewhere else but I’m not sure if sickle cell is going to let me do it and I feel like I’m not worth it.Pls help I feel like I need someone to talk about it!

    • Tito Oye says:

      Hey Ari,

      It is a fear that a lot of us have! Unfortunately there’s not much we can do to change the fact that we have sickle cell, so we need to learn how to live our best lives with it…even if it means that while we go on the holiday of our dreams we have to carry a whole pharmacy with us.

      Please do not let sickle cell stop you from doing what you want to do in life, do not let it win.

      Where do you want to move to? Start doing research into the area and reach out to people in those areas who live with sickle cell to see how they find it.

      Please message me privately so we can talk, I can help you research and connect you with other sickle cell patients ♥️

    • Celena Shaw says:

      Hi Ari,

      My name is Celena, I fully understand all of your worries, fears and concerns especially because I have Sickle Cell Anemia SS and has felt every one of your worries. Yes, it may feel like a hassle to always have to carry your medications and pain medicines everywhere with you but, it’s something you’ll eventually learn to deal with. Don’t let having Sickle Cell deter you from living life or your dreams (That’s what my wonderful mother always taught me) no matter if it may be traveling the world, going on vacation or moving to another state. God didn’t put you in this world to die from fear, he put you here to live life to its fullest and to help you learn to live your life in a better, healthier, less fearful, more exciting way of everyday.

      My mother has always said to me, “Celena, all I want you to do is live. I want you to live your life, live the life that God gave you because no one else can live it for you”.
      And I don’t think I ever really understood what she means until now, after reading your comment. As scary as it may seem for us as people with Sickle Cell to live, we have to live it and live it up to the fullest no matter if we may fear getting sick, because despite being scared you might find that you can do maybe all the things you’ve always wanted to do and even dreamt of doing along with so much more. While also, not to mention, have fun doing them whether, you happen to get sick or not it’ll be worth you taking the chances!!!!!

      I don’t think I’d be the person I am if I hadn’t taken some chances in my life or had my wise mother to keep cheering me on and yet I’m about to celebrate my 36th birthday in a week which, my mom and I Thank God for all the time because when I was younger doctor’s said I wouldn’t live past 25yrs but, we never listened or believed them.

  3. Gbenga Samuel says:

    I’m 21 years of age, I’m a sickle cell patient doing well, just want to say this post is the most encouraging thing I ever came across throughout my sickle cell journey, thank you.

    • Tito Oye says:

      Hi Gbenga,

      It is so good to hear that you are doing well!

      Thank you so much for your comment, it’s really making me smile. I hope I can continue to encourage you during my journey ♥️

  4. obaro marvin says:

    your story just inspired me i would also like to help myself and and others in Nigeria the problem is i don’t know where to start from

    • Tito Oye says:

      Hi Obaro,

      Thank you so much for your comment. One quote that I love is:

      “Do what you can, with what you have, where you are” – Theodore Roosevelt

      Think about the help you wish you had growing up and start taking small steps to providing that help to you and those around you. Use the things that you have access to. I hope that helps ♥️

  5. Rose says:

    Tito, thanks for sharing your thoughts and experience,a lot of people are still suffering in Nigeria due to lack of money to eat balanced meals. What are your medication for yellow eyes?

    • Tito Oye says:

      Hi Rose,

      I am not aware of any medication to help with yellow eyes (jaundice). I know that drinking plenty of fluids help with that symptom.

      A lot of people in Nigeria do not have access to the treatment/resources needed, it might be worth reaching out to a sickle cell charity based in Nigeria for assistance.

  6. Sam Oye says:

    Hi Tito,
    I am a carrier of d AC genotype and about getting married to d love of my life who has d SS genotype. We are aware of the risks involved and have been advised against getting married.
    What’s your advise for us, u being a carrier too?

    • Tito Oye says:

      Hi Sam,

      Congratulations to you and your future wife, I wish you nothing but the best!!!

      Please please speak to your wife to get a deep understanding of how sickle cell impacts an individual. This way, you can be there for her in the best way possible, familiarise yourself with her health care plan and do research into the best possible treatments for her.

      If you are planning to have children, there is a 50% chance that they will have sickle cell, try and understand what it will mean in terms of the provisions that need to be made for a child with sickle cell and make the necessary arrangements so that you are prepared just in case it happens ♥️

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