people with Sickle Cell Trait can and do have symptoms it is not very common for instance but I have been having these symptoms for years

severe cramping in the stomach, unexplained fatigue, dizziness, problems with high altitudes, motion sickness.

I think that the Sickle Cell Society should stop putting everyone in the box. They also need to update the information on people with Sickle Cell Trait. So much info on the disease and they are still telling people that the trait does not produce symptoms this is not true.

18 Replies

  • I have met a lady in the day unit I go to for pain relief who had the trait and still required pain relief and transfusion. I guess because its quite rare that's why its not taken seriously. my parents are both carriers, but my mum gets tired a lot. I guess just like sickle cell patients have varying degrees of seriousness so also does the trait.

  • thanks for the response. I have never thought about it like that, it is true for years well my whole life I have had

    un-explained bouts of pain, and discomfort. I still get motion sickness, and I have been having pins and needles pain sensation in my upper thighs for years off and on and now I believe that it is due to the Sickle Cell trait. I will bring this up with my present doctor.

  • I too have been having leg pain for years for some reason I now have chronic pain I'm my legs hips and thighs as well I always thought it was due to the trait and now I am convinced

  • I have only trait. And just went though a very difficult pregnancy I had such severe pain I was in the hospital for 2 months. Pain shortness of breathe anemia with hemoglobin down to 10 weakness fatigue sharp pains in my rib bones and calf bones the doctors didn't believe it was trait but they treated my pain and let me have oxygen and fluids. All I which. Helped. They couldn't discharge me until I had the baby bc my blood pressures stayed very high with the pain but would drop low when the pain was controlled. But this wouldn't last long and my pressures would shoot up to stroke levels. And blood pressure medicine didnt work bc of how low I would go when the pain would subside say for a day or a few hours. They did an MRI which showed the sickle changes in my back bone. But they still refused to believe my symptoms were bc of sickle

    cell. Sometimes they treated me like a drug addict but that didn't make sense for them either bc I would only use the bare minimum of the medicine they made available just to not be in screaming agony. They would threaten me that th baby was going to come out with all sorts of problem but with a lot of pray she came out screaming and healthy although I had to deliver a bit early so she a little trouble nursing but that was it. I do have a hematologist that treats me in day clinic but she doesn't have privileges at the hospital I was admitted to so it was a nightmare. But fortunately we are both ok now. I had to figure out for myself how to wean down from the meds and transition to gabapentin which helps the pain a lot. But I feel much better now that she is born. I'm not having the kind of pain and other symptom to the extent I had them when I was pregnant. We all just have to keep talking until someone finally listens. Thank you for your post

  • I am so happy that you and your baby are doing well. My cousin had Sickle Cell Disease and he died at age 55. Some of the symptoms that I am reading here and the ones that I have sounds very much like the disease only not as severe. We will continue to discuss our symptoms and get the right person to listen and act on our behalf.

  • Yes. That's what we have to do. There is so much that is not known yet

  • I also have trait and been sick for the past fee years. I also been diagnoses with low vitamind b12 and d. So i am wondering if it is common ammong others who has trait

  • On some other forums I've been on lots of carriers have found they have low iron levels.

    In my case I was found to have low vitamin D, iron and b12 levels last year.

    It took 9 months for someone to listen to me about my vitamin D symptoms and in the process the other symptoms which I had been complaining about for 4 years were uncovered.

    I've come to the conclusion certain NHS GPs are not only closed minded but racist and sexist as well. One GP went as far to tell me I was making things up, wasting NHS resources and his time. I complained about him but unfortunately I didn't have a witness so my complaint was ignored. Every time some one listens to me they are female and from certain ethnic backgrounds.

    I'm now with new doctors and refuse to see any male ones to decrease the risk of problems.

    Oh when you have operations under GA in London or any major UK city they have been told to check Black patients aren't sickle cell carriers. This was not done for me and the anaesthetic doctor was shocked when I told HER. Luckily I donated blood for 7 years otherwise I wouldn't have known and the operation would have been cancelled.

  • I have had low vitamin D and also experience fatigue for years.

  • Im 45 and i have the trait and recently i been having spots of pain in my right leg as well as leg swelling numbness and my hemoglobin numbers are never consistent. My qualify of life is work and then home and on the weekends I basically just rest because I'm in the medical field so I suffer through it Monday through Friday and then I spend my weekend resting but there has to be something better than this because I'm too young to feel like an old person. Ive been in car accidents so i alo deal wih back pain. But talking to a doctor about legitimate pain is such a hassle unnecessarily because they make you feel guilty for no reason. But no one knows how i feel after standing 10 minutes walking in a grocery store and forcing myself to do normal things like walking but my legs are on fire to where im slouched over and i havent realized it.

  • I have an 11 year old daughter with the sickle cell trait and she has been complaining lately of fatigue, dizziness, motion sickness and stomach pains.

  • Yes exactly. I am a mother of a boy who has sickle cell trait plus alpha thallaseamia which is rare? Recently diagnosed,,,these posts have helped as I have been struggling to find answers as the drs ones don't match my sons symptoms

  • Me as well. Please let me know what you find out. My doctor just blows it off.

  • My son has sickle cell trait and tires so easily, has frequent indigestion problems and dehydrates during illness incredibly quick, last time he got sick after vomiting a few times almost went into a metabolic acidosis, even after he was already at the hospital getting treatment. At school they complain cause he goes a lot to the bathroom but he drinks a lot of water cause he is always thirsty. I agree that there has to be more symptoms and the phrasing "in rare cases" fot SCT has to be eliminated. you look up information in rare cases sudden death, that's no rare that's alarming

  • Yes definitely the sudden death connected to SCT is extremely alarming and I am seeking more knowledge and please

  • I am very happy to find that others around the world are experiencing things that i experience as well being a carrier of the sickle cell trait. This idea that they have come up with that "in rare cases carriers have symptoms" is totally untrue. My symptoms are low iron levels, fatigue, and muscele pain. I also notice that when i get cold its unreal, i literatly shake like im having convulsions and my hands turn white this happens randomly even if its like 60 degrees outside!

  • I get the chills down to my bones when the weather changes.

  • You're right. I too have sickle cell trait. Maybe if a lot of people contact them, they can do more research. I get muscle and joint pain in my legs, stomach cramps and tire easily. If we have a Facebook page and probably generate some noise, maybe they will be willing to assist us.

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