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I’m Mad at My Parents

I know all you parents are going to jump on the bandwagon and tell me that I shouldn’t be mad at my parents…but truthfully, I’m livid!

Today I was in an EKG class with 2 other Nigerians who just happened to both have kids with sickle cell. The guy, his daughter of 9 months just got a successful Bone Marrow Transplant and is pretty much ‘cured’ of the disease. The lady, her daughter of 9 years has been dealing with it and she’s determined to do everything in her power to get her daughter on the BMT list.

I’m mad at my parents for not trying harder. I’m mad at them for not pursuing finding a viable treatment and cure for me like they pursued their education, careers and religious mission. I’m mad that I’m 26 and no longer eligible for BMT due to the many transfusions I’ve had. I’m mad that my parents just accepted what the doctors told them back in the 80s and didn’t do any additional research on their own. I’m mad that my parents decided to seek path of medical management instead of a cure. I’m mad at my parents.

See the thing is, one of their friends had a son with sickle cell and they flew him to the UK to get the BMT done back in 1984 and he doesn’t have the disease anymore. So they knew about it…that it was a possibility but they let the illusion of not ‘having money’ stand in their way. Not having money didn’t stand in the way of them both having doctoral degrees but it stood in the way of me kicking sickle cell to the curb. I have 3 sisters and none of them have ever been tested to see if they are a good bone marrow transplant match.

My mom called me today to inquire about my health and I was so upset that I almost snapped at her. I know it’s not their fault…I know none of it is but I’m still mad anyway. I hope this stone of anger disappears tonight. I hope that I don’t end up resenting them for a long ass time.

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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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6 Comments

  1. Kerry
    Kerry May 07, 16:15

    I understand exactly where your coming from!
    Im 15 in the UK and have sicklecell. Ive been trying to speak to my docs about a BMT and i think i should get one next year.
    I am mad at my parents too, as BMT’s are safer when your younger and my parents knew of it too but didnt bring it up as i grew older, i had to find out about it for myself. I also get very upset at the fact i have sickle cell and then my younger brother dosent have it. It annoys me that despite me having the illness my parents were selfish enough to have another child, i still need to ask my mum about this when i have the courage. It also annoys me that my younger brother and older sister dont realise how lucky they are to not have it! Im really sorry to hear that theres little hope for a cure for older people too. How is it growing up with sicklecell? as if i cant get the transplant id just like to wonder/know? I find most annoying thats its stunned my growth, im really tall and skinny and it makes my eyes quet yellow, it just messes with you alot. anyways its good to talk to someone on your level
    kerry

  2. Sickle Cell Warrior
    Sickle Cell Warrior Author June 03, 16:11

    @Kerry, this article was so cathartic for me to write. I love my parents to bits, and would never tell them this, but it was so important just for me to address and get out there. As of now, NIH is developing a stem cell treatment for adults that if successful will be able to help everyone with sickle cell. They are in Phase 2 testing right now, so hopefully it will get FDA approval soon and be available for everyone. Welcome to the site!

  3. Jacquie Creft
    Jacquie Creft June 05, 20:38

    Hey,
    I’m almost 28 years old and I had the BMT when I was 22 years old. My hematologist tried his hardest to talk me out of it but I did it anyway. Even though I am better than I was 5 or 6 years ago, I still deal with pain almost on a daily basis because a transplant will never get rid of the damage that sickle cell has already done to my body. I would never advise against getting it but I would say don’t get your hopes up because you never know what could happen, just take it one day at a time. I am grateful for the fact that I was able to get the transplant which helped me to finish nursing school and becaome a nurse. However, I get frustrated because I still am in the hospital 4-5 times a year and I still need pain medication on almost a daily basis. What I would say is really, really think about it and do your research before you make such a life changing decision. God bless and good luck.

  4. Sickle Cell Warrior
    Sickle Cell Warrior Author June 12, 00:59

    @Jackie, thank you for sharing your journey. I really value your input and will add this into my consideration of whether to move forward with the stem cell transplant. I hope that things turn around for you and you start doing better soon. Love, SCW

  5. Sickle Cell Warrior
    Sickle Cell Warrior Author June 28, 22:49

    Jackie, wow…you have been through the wringer. Thank for for educating us and showing us the other side of the coin. It is important that we make this decision with our eyes wide open and fully understand the risks and the benefits.

  6. Pheobe
    Pheobe October 31, 07:37

    My name is pheobe I am 22 years old I know nothing of BMT ..I come from Kenya,i have been battling sicklecell all this year’s by the use of folic acid and diclofenac though I don’t know if they can affect my ability of having children,secondly I am tired of this sickness I just wish I could get the help of it being cured

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