Sickle Cell Society
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Living with sickle cell trait

Hello, my name is Lory I am a 23 year old woman. In high school I played 3 sports. As I begin to run track I started to get very fatigued, have joint pains and always dizzy. I thought it was because it was super hot on the field. By the time junior year came, I was no longer a runner, strictly high jumper because after running the 400 or 800 I would literally have to be carried off the field. I loved track but when the time came for me to go to college, I chose to accept a full ride basketball scholarship. At this time I didn’t know what was going on with me, I just thought my body was used to indoor sports. My freshmen year of college i played in Missouri and after about the third week of preseason my body completely shut down. No matter how hard I pushed, I couldn’t keep up with the team and one day after sprints my coach told me college ball isn’t for everyone and it was time for me to pack up and go back to California. The next morning I got up around 3 and went to the gym and just ran and ran and ran to the point I had all body aches and was throwing up. Two days later I couldn’t get out of bed, my coach came to my dorm, picked me up and took me to the hospital. At that time I found out I was anemic, never been told that; didn’t even know what it was at the time. I had to fly back home and have an emergency blood transfusion. I was reluctant of that because my aunt was given a blood transfusion before and was infected by hepatitis C. So at the point I decided to stay home, visit the doctor regularly and take the iron pills and vitamins that were given to me. My hair fell out and I was not allowed to do any activity at that time. After about 4 months I went on to play ball again, getting another scholarship. My junior year of college I got pregnant, I was extremely sick, had episodes of the biggest migraines to where I didn’t want to open my eyes, my body ached, I could’nt eat and at 5 months I didn’t even look pregnant. They diagnosed me as having gastritis and if they didn’t cure it in time it will turn into stomach cancer so I went home once again, at my 7 months check up they tell me I have sickle cell trait. My question is I have been getting check ups and physicals my whole life. What took so long for them to realize I had sickle cell trait?? Reading on it now, I could’ve died exerting my body so much, not knowing I had it how would I have known to ask my husband if he had it. If he would’ve our child could’ve gotten the disease! I’m just so confused because I am not understanding how they couldn’t have known. I do find comfort in knowing I am not alone but with that being said, neither one of my parents are carriers nor any of my 6 siblings have it. The doctors I have spoken with don’t have the answers I seek. Yes, my great aunt had the disease but she’s the only one I know of who had it and she passed long ago in Angola. I just want answers.

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I have sickle cell trait and it has never affected me (that I know if) I think that it can affect the level of oxygen being carried around the body .

I think that you can suffer from it if your body is put under tremendous strain..

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Thank you for your response but I think that’s what it is. Since I’ve stopped playing ball for an organization and just play pick up I’ve been feeling better on the court.

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When did you find out you had it? My biggest question is why did it take the doctors so long to tell me that and from what I’ve been reading it’s something you’re born with.

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It is something you're born with but I'm guessing you have to actively test for it. I had my daughter tested to as its heredity and she had got it. It shouldn't affect you unless you're putting your body under tremendous strain like it sounds like you were so it's good to hear you're feeling better but a shame you can't push to do what you wanted to do.

On a plus side, having sickle cell trait means we cannot contract malaria! 👍

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No having sickle cell trait does not mean you are immune from malaria. It just means you are not so vulnerable but if well exposed, a traiter can get malaria. I have the trait and I have suffered from malaria quite a number of times when I go to west Africa.

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Oh wow I didn't realise that. That's very unfortunate for you!

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Hello Loryd I have sickle cell trait and took a while until I knew I had it and the way I was told was horrible and very insensitive. I have experienced a lot of problems with sickle cell trait I have had really bad chest pain because of sickle cell trait and I was also hospitalized for a week or 2 because I was having a sickle cell trait and I had low oxygen and low hemoglobin levels. I would say the reason it may take the doctors a long time before they diagnose someone like or me is because of they miss something.

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Thank you for sharing! It’s just so crazy & people who don’t have it always says only people with the disease experience things related to sickle cell which is so untrue. It feels good to be able to talk to other people living with this and understanding how life is for me

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You are welcome. I am also happy to talk to you and other who understand the symptoms from sickle cell trait. A of doctors are ignored of the symptoms of sickle cell trait and try to say your pain comes from another place and past it off. What a lot of doctors fail to realize is sickle cell trait is a blood disorder that is still symptomic and acts definitely on each person with sickle cell trait.

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Stay hydrated, I was born with SST and very symtomatic. I started to notice as I got older I can only push a bit or my throat and chest would close and i could not breath. I loved sports and endured the same problems.

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I have sickle cell trait. I played 4 years of college basketball and 13 years after college in high level leagues. I have never had any symptoms. Eat properly, exercise regularly stay hydrated and you're good.

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Hspencer30 and LoryD as with SS , the response to SCT varies. Some with SS don’t get sick as often or as severely and can tolerate more activity without having symptoms. Others no matter how well they attempt to use prevention still fall ill. It can also be deadly for both. It is a blessing that you did not leave us Lory. Your coach may have saved your life.

It is also possible that one of your parents has it but has not been tested. Have all the members of your family been tested?

It’s an inherited problem so one of your parents should have it.

Do stay hydrated and monitor your activity. I’m sorry it has been such a hard road for you.

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Thank you for your response but yes, I actually just found out my dad has it. He was never tested and after being on here I asked my parents and siblings to be tested because I was really confused on how I had it but no one else did. My father who never had symptoms as well as my brother has it. My father who also played college ball 3 years over seas & in the NBA never had any issues so yes that is absolutely correct not all with it have symptoms no matter how much they put their body through. I guess I was just one of the less fortunate ones. But it’s fine I’m definitely learning to live with it and I’m on my journey for over seas play and I’ve been fine. Just been taking things with more caution. I’m really blessed to have stumbled across this site and people like you who have great feedback and I feel less alone. Thank you again for your response!

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I’m happy for you. We actually have an internet radio show. And we are putting together a conference to highlight these issues. It would help so many others if we could feature you. Would you be open to that?

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Yes, that will be fine.

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Email me at

Mpesante@rocketmail.com

And I will forward your info to the producer. You can check out the show on LA Talk Live Internet radio WDC radio which stands for Whatz Da Count. You can check it out on IG also

@iamwdc

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Have been telling health professionals for over 20 years that we can suffer pain etc due too sickle cell trait... every time they tell me no its the trait there is no ailments I want too scream... every person with SCT is unique and some get more ailments than others... Me and my 4 siblings have SCT... It has skipped my first born but my son has it...my two sisters children dont have it... but my two brothers both have 1 child out of 2 that has SCT...all suffer with pain in our knees... elbows...shoulders.. I know its related too the SCT.

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