If you have sickle cell trait, do you ... - Sickle Cell Society
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The question strikes me as needing clarification. For me SCT symptoms are triggered by an event that stresses my body not my mind. Also this happens frequently, which someone else might refer to as "all the time". Lastly, once a full blown crisis has lasted three days -for me - it then takes months to recover. During my recovery period, I experience symptoms "all the time".
I have Alpha Thalassemia and sickle trait I am in consent pain some doctors say I should not be in pain cause it is only the trait I am 67 have been in pain for over 47 years. Doctors don't know everything. My condition is called Alpha sickle cell Thalassemia, some Doctors say because of both is the cause of pain some say no.
I have episodes in different situations, I've have them pass while sitting down with my dogs to getting out the car with my parents, I have the trait from both my parents I'm there first of 4 children, my doctors just say " exercise more, drink more water, its a muscle spasm" its not fair to be in pain and them not to understand.... We need more research we need to be heard.
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I am going through the same thing and I am 41 i have been admitted for renal failure constant pain crisis and it's all because of the hemoglobin S
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Trait from both should be full disease. Are u sure it's not full? But you can have symptoms all the time with just trait.
Yes my doctors did test when I was 12 for some surgery's and they said it was a trait.. I have thought the same thing but they say its just the trait
It hurts and doctors do not recognise it because it's the tray what can I do I'm 59 years old
I'm the same, I have trait and my doctor tells me it should not affect me. But they all tell me my hemaglobin (sorry about the spelling) is the type which cannot carry or absorb iron etc. So I'm told taking iron makes no difference.
This is confusing, because my latest blood tests show I'm anemic. At first I was told take this prescription for iron and take tablets 4 times a day. I reminded my doctor what they first told me. After viewing my records, he was like "oh yes, iron will not help you, take it once a day instead". No other advise and I'm feeling real bad 2 months down the line.
Now I have the pretty much the same symptoms as others in the forum. Made worst after my period, which was longer than usual as well.
Like others I'm told I trait shouldn't affect me, I'm not even near the serve trait side. My question is, is it possible doctors do not have all the information?
My cousin and nephew have reported similar experiences, my nephew was hospitalised, but told they could not work out why his legs stopped working and became so painful. He's only 5! I worry he like myself and cousin will grow being told it's all in our heads and we need to just exercise more. Are there any answers out there that may help us? After all we may not have full on Sickle cell. But something is affecting us and it is painful.
It is not in your head they need to stoononkynpaying attention to SCD and start paying close attention to ppl with SCT!
I hear that I'm gonna get rested for the Antilles and Oman. We just to be our own advocates. Seriously!!
Symptoms only started at age 50, right around the start of menopause, and so far have had only 2 episodes, the one at 50 and one about 6 or 7 years later each time symptoms of joint and muscle pain lasting a few months then gradually lessening and disappearing.
They need more studies for SCT , I have at least two ER visits per year due to uncontrol pain!! I have 48.5 sickling blood ...according to my Hemotologist.
Hello. I have not paid attention to my symptoms and SCT. Is it difficult to have a hematologist give you the % of blood that sickles? I live in an area with a small African American population. How did you find your hematologist?
More and efficient research needs to be done...there are plenty who say SCT gives them pain. The medical community needs to stop saying you get no pain from it. No one is trying to undermine the impact of SCD.
I sweat fairly rapidly. I'm talking about walking in the store; walking from car to my classroom on the second floor. Every coach I've ever had asked me if I had asthma due to my wheezing. I notice when I sit on plastic or a tabletop, there's a sweat outline when I stand.
I have found that my hemoglobin S gene dominates my hemoglobin A I have been admitted for acute renal failure and constant pain crises I am looking to get tested for AMTILLES or OMAN. the doctors keep saying I. Complicated. Explains why I been sick all my life. Maybe now doctors will listen to their SC patients!! We are not lying....
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I was diagnosed with sickle cell trait as a child (about 7) and told it wouldn't affect me. However in the last 5 years I have had 2 long haul overnight flights where I have woken up feeling extremely unwell. Feeling faint, sick, lips tingling, discomfort. It was only after the second time I thought to investigate more and learnt more about the affect sickle cell trait can have and that this may be related. I am also starting to wonder whether the extreme bouts of fatigue I get every so often is related. Some days I will sleep constantly on and off for a whole day (mainly weekends). I also sometimes get strange sensations in my joints. I would really like more information about the trait and it's potential impact as I am only now learning more.
I'm having pain im my right arm what should i do...i have black blotches and it is very painful.
Yes I wouldn't say all the time, but quite a lot but Dr's won't acknowledge because I only have the trait, make out like iam imagining it. Dr had to Google sickle cell trait infront of me first to find out what it was! What hope do we have. Went to a specialist who confirmed I have hbD strain again if I has S she sed they're are some cases now that have symptoms but as no research has been done and very little on other strains her hands were also tied to say I was having symptoms even though she acknowledged that everything I was telling her were symptoms
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