Crisis but only sickle cell trait?

I am a 44 year old lady and have been told iam sickle cell trait for many years now. what i need to know is could i still get a crisis as i ended up in hospital recently with stomach pain and ended up having my appendix taken out. However when this was done they were perfectly normal. I have had various visits to hosp for joint/abdo pain on numerous occassions and nothing has been found. Please can someone help with this problem?

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  • Hello Karen and thank you for contacting the Sickle Cell Society.

    The Sickle Cell gene is an inherited gene and so you have had Sickle Cell Trait since your birth. This means that you do have some sickled red blood cells but it is very uncommon for people with sickle cell trait to exhibit symptoms of sickle cell disorder such as anaemia or pain crisis due to only having sickle cell trait.

    As the appendix is a tissue that is not used in humans it is more than likely that it will not affect your red blood cells and you will continue to be healthy.

    The joint pain is most probably not related to you having sickle cell trait and may be in relation to hormonal changes as you go on in life, another condition or perhaps nothing at all.

    In any case, if any of these symptoms persist you may want to talk to your GP to book you an appointment with specialists within those areas.

    If you would like some mroe information about sickle cell trait and sickle cell disorder please visit our website at sicklecellsociety.org

    Thanks again and best Regards!!

    Sickle Cell Society

  • Thank u so much you help me a lot

  • Hello,

    I have the trait and alpha thalassemia. I was told the combination was probably what was causing me to have crisis attacks on and off all theses years.

    How can this organization tell so many of us with the trait that we are wrong when we know what we feel in our bodies? How can you say that we are wrong when you refuse to do more research with the advancement of science?

    I have a real puzzle for you; how can a child have the sickle cell trait but neither parent has the trait or disease? Not possible is what you'll say, but I am living proof. More research needs to be done.aybe start where the article below left off.

    sickle.bwh.harvard.edu/sick...

  • Neither of my parents have it either. My mom went on to have more children in another marriage and my half sister has it too.

  • I just had a baby ND was told he has the trait as well but neither myself or the father has the traits. I took him to his pediatrician and they tell me it has to come from one or the other right. So I'm all confused trying to figure this out but what makes it evenmore crazy is my other 6 children don't have it but has had so different types of anemia am I going crazy ?

  • Same here. My parents don't have it either

  • Thank you for posting

  • I am in the military and I get the exact same response. I have TERRIBLE leg pains when I run and lose my breath. It feels terrible but I'm looked at as if I am just lazing and not exercising. It really sucks to be looked at that way when I k ow I have a medical problem and my sickle cell trait is the problem. Also I've gone hiking and as I climb I get so winded because the high altitude causes me to lose oxygen. I am a 27 year old black female. I wish they would start doing actual studies and learn about sickle cell trait. also when o joined the military they said if you have more than 45% sickled cells you can't be in the military I have 43.5% and I'm not sure what that means. 

  • I just had a baby ND was told he has the trait as well but neither myself or the father has the traits. I took him to his pediatrician and they tell me it has to come from one or the other right. So I'm all confused trying to figure this out but what makes it evenmore crazy is my other 6 children don't have it but has had so different types of anemia am I going crazy ?

  • Hi, I just wondered, when you say it is very uncommon for trait suffers to be symptomatic, have there actually been any surveys on trait carriers that you could link me to so I can follow this a bit more in depth?

    I've read of many trait carriers that are symptomatic. If there hasn't been any surveys yet that you can link me to , Is the sickle cell society likely to be carrying out any surveys in the near future that will be published for the general public to view?

    Thanks

  • I have two children with the trait and due to it they have had a few symptoms. They have always been brought on by altitude, heat or excercise. Altitude can cause a few problems. They have hade nausea migraines chest pain. But it usually goes away with rest or coming back down from the altitude.

  • Excuse me but i have sickle cell trait and ever since i was born i have felt pain and get sick very often and I'm just tired all the time and my sister does not have it. I am not crazy ok so i really think you should do somev

  • You are not crazy. And if you have Medicaid then humor them by asking for a ton of expensive tests which will all be negative. Only for them to tell you it's in your mind and send you to a psychiatrist. The doctors and the sickle cell societies who know of over 30 years of case reports on pubmed which is a site for physicians , deny crisis in trait until its too late and we die. Then autopsies reveal that we too are sickling like those with disease. Trait usually means you won't have symptoms or you won't have them until later teenage years or later. And then there ususally have to be triggers. Like heat or too much travel or exertion but just like with disease for some ppl with trait the triggers are not much or are not obvious. I started suffering the same symptoms as you but add terrible sharp pains in my bones with swelling in my hands and feet. Also known in ppl with disease as hand foot syndrome. I get severely short of breath and dizzy and nauseated. I get terrible pain in my kidneys with frequent UTIs or sometimes no infection just pain At first doctors told me basically I was nuts. But I did my research. I finally found a hematologist that will give me fluids in a crisis or impending crisis. And a family doctor that treats my pain. My pain after two years of untreated crisis , is now daily. My kidneys and calves have not recovered from repeated untreated crisis while doctors and societies lied to me and ignored my condition. I often wonder if this chronic pain could have been avoided if someone would have taken me seriously sooner . The best intervention with. The best chance of protecting your limbs and organs is IV fluids. Then sometimes you will need IV pain medicine. Pain medicine is why they don't want to admit we have problems too. Because besides fluids the only treatment they can offer is pain medicine. And since most of us with disease and trait are black or brown we must be drug seeking criminals. But you must be persistent and advocate for yourself. Its your body. And this can cause permanent damage. You can suffer strokes or kidney failure or severe life threatening muscle break down. You don't want be a case report. We only seem to make the journals once we are dead. While we are alive they tell us our symptoms are something else. They cant say what else just myst be something else In One case a man was diagnosed with schizophrenia bc he had visual hallucinations. After he died they found the sickles cells in the visual centers of his brain! I also have two children with trait having the same symptoms and I cant get a pediatrician to give them fluids. I just have to watch them suffer day in and day out when it's too hot or they do normal kid stuff like forget to drink water. It's so depressing. But I want you to know you are not alone and you are not crazy. You can try some supplements that kept me healthier longer. One is called Noni Juice but you have to get the brand Only Natural Inc bc it has the highest concentration of Noni. Its only about 30 bucks for a month supply. You take an once in the morning on an empty stomach and it keeps down the inflammation . I also take green herb from green vibrance which I buy at vitamin shoppe. They have other types of green herb so u pick which one you like. The point is to increase the oxygenation of your blood which can decrease episodes. Also make sure to keep your protein intake high or take a protein supplement and I can't stress the importance of water enough. Sometimes two 325 mg aspirins seem to slow down an impending crisis. But you have to make sure you don't have risk of stomach bleeding or allergy. Sorry this is so long but I hope it helps. God bless you

  • Thank you so much for ur post!!

  • Thank you I have the same problems I will do all of this thank you

  • Thank you I know I'm not crazy

  • 5hank you so much. I'm 50 and in daily suffering from inflammation in my joints from waist down even my bank k. I take flaxseed oil and we'll women one per day. I want to stop everything and start a fresh taking the right things to feel better.

  • This was very informative for me suffering with the majority of what u outlined here plus more. I now will be pushing for further treatments as all that's been checked at moment (for my migraines) is a scan for tumors, reading this they may be missing vital signs simply cos I'm trait. Thank you

  • Omg. Thank you for this helpful comment. I have been trying to figure out my son's cause of pain for years and the doctor's say because it's just a trait that there's probably nothing wrong with him but he's been complaining about pain in his legs since he was 4 and it occurs mainly in the morning. Now he will be 10 and still have the same complaints. Something always hurts on him. I wish someone can figure out what he needs instead of him continuing this painful experience before it gets worse.

  • I am going through this same situation I just had a Dr. tell me oh u dying have sd u have the trait this doesn't cause crisis and is not life threatening u don't need pain meds or just depressed u need a psychologists and get depression meds!!!!!!

  • I know that you have posted this 4 years ago but I hope you have had some progress!

  • Hi I'm 47 years young, white Portuguese female and I carry the trait. I have had several crises in my life and just recently went throug a crises . I sometimes can not get no air and my muscles get so week I also have been animic since I was young. I have been checked for thalasma but test came back negative my Dr does not know what wrong with me but I know I'm going through some kind of crises due to carring the trait my youngest son carries the trait as well.

  • God,reading your comment on this matter ,had me crying as though I lost a love because I am now 51 years old and been living in pain since I can remember,and now the pain is unbearable and one pain after another,like you said test proves nothing is wrong some arthuritis but not causing the amount of pain I feel expat after exray on Bach and knee only to be told little arthuritis and given pain pill that does not help at all,then finally 2years of this given an MRI to find degenerative bone right at the lower area of my knee an upper area of my leg that meets the knee on the inside area of the knee,both my knees do to sickle cell trait but that's not all I can go for days but I will tell you this and I have to go but now I now am dealing with my blood count can't seem to stay above 9 for more than 12 weeks had numerous test looking for blood lost throughout my body found nothing I finally ask could it be the trait,not sure they say but good idea since they have nowhere else to go.....WOW I replied. TheLifeOfaTrait;( Love You All

  • I am trait and have problems so do both my sons no one listens you are not alone

  • I agree. No one listens. Me and my four children have the trait and all experience pain crisis. I spoke to the sickle cell foundation in my area today and the lady literally laughed at me and said it was no way possible that I have pain from the sickle cell trait. I've told her that I've been in the hospital have been giving IV fluids because my cells were sickling and she should told me that it was conincidental that my cells were sickling but the pain was coming from something else. However, I've been experiencing this all my life. I wish they would conduct more studies on individuals with sickle cell trait because it more to it than meets the eye.

  • I wish they would do more research to but I heard of a man dieing with the traitand they found symptoms of a crisis

  • I also have crises' from time to time... mostly in my lower back. The pain is so very intense that I can barely move or breathe (my breathing is very labored during this time). My pain is very sharp and intense, it seems to radiate from the lower part of my back to the middle and my sides... it is so excruciating and usually lasts for 10-30 minutes (it varies greatly). When I told my doctor that I had SCT he looked at me like I had fallen off my rocker (I'm olive skinned or white) and it also seems to me that no one listens when you say that you have pain. I've done endless research and everyone says the same thing 'SCT carriers rarely if ever have any symptoms' I call BS! I get sharp joint pain quite a bit, but for the most part, it's fairly manageable. I have been looking everywhere trying to find evidence of what I'm going through in SCT carriers, but it seems to be limited to those with SCA and SCD... I know that I'm not crazy and I'm so glad that I am not alone. I always try to stay hydrated because if I don't, I'm in for days of pain. I think more research needs to be done concerning those who carry the trait because as far as I'm concerned, it's just as much to be worried about as the full blown deal.

  • I'm having the same problems like my lower back and my bones hurt bad when its cold from my neck to my feet but its not all the time

  • I am 62 and also have the trait. I just thought that my age and arthritis were causing my pain,but it could be the sc disease.I pray that there will be a cure for Sc other than hydoxeria and bone marrow transplants.They are both. So risky.

  • I understand I am 44 and the pain is in every joint you can name. I have gone to a hemo.Dr. cause with some forms of ss you may be misdiagnosed,it could be sickle beta thalassemia. Dr is retesting me i'll know in 6 wks.

  • I also have trait and have been sick with all kinds of symptoms. For year my docter told me there was nothing wrong with me. Last year on advice of a collegea i dit a bloodtest to check my vitamins. And to my surprise my b12 and d were very low. At first i was told not to need treatment, but i didnt agree. Now i am still searching for the right treatment. I would advice everyone to also check vitamins. My vitamin d was 17 and b12 104. I dont know of you can compare results with mine because i live in holland

  • Hi 44 I new I had it when I was little I'm aways in pain

  • You helped me tremendously! !! I'm 56 years old and suffered with leg pains as a child and no one ever knew why until I became an adult and researched myself and found documentation from dead athletes. The sickle cell trait carriers do have crises! I'm sure they are mild compared to SC and SS patients. I have never been hospitalized. Thanks for the Non I juice suggestion.

  • Trust me, you are having crises. I have been to the hospital 5 times for crises. I am in great pain as I type this right now. From my experience, if my hemoglobin is low enough and my stress level is high enough, the pain begins. I have been to several hematologists who told me I was wrong and have never suffered a crisis. Lucking, I am seeing a hematologist currently who listened and wants to do IV iron infusions to bring my hemoglobin up as quickly as possible without a blood transfusion. Increase iron rich foods and orange juice (folic acid in juice helps the iron to metabolize better in the system). Good luck!

  • I ve joint and bone pains almost everyday of my life though not so serious. Sometimes i used to think may be am actually a sickler but my genotype alwz shows a trait(carrier). Thought am the only one experiencing this symptoms. Thanx for this post

  • I have the sickle cell trait and I have always been getting little pains here and there but i never took it for anything although i wondered what was causing that. I went to a bone specialist and one point who told me that my cartilage was dried so he gave me an injection but that did not work. Most recently I have been having pain in every joint you could think of and I could not understand what was causing this and then i remembered i have the trait but like everyone else i was told that you don't get any pain like the disease. So I was a bit confused but then reading these posts helps me a lot knowing that I am not alone and I am not crazy.

  • I have sickle cell trait and my mom said when I was younger I alwasy complained about joint pain. I still have joint pain at time.

  • Hi All,

    I too have sickle cell trait (SCT) I'm 54 years old. my brother who was 10 yrs older than me died at the age of 38 he had sickle cell SS, so this runs through my family. at a young age while in middle school I passed out in gym class, where I was not told this was due to my (SCT), it wasn't until I was 18 years old in the Army I passed out while I was in basic training, that when I was told I had (SCT) with complications. I suffer from terrible foot and joint pain. twice I been hospitalized. so those who are out there keep going to your Doctors and let them know you have (SCT) don't let them make you suffer in silence.

    Wanda61

  • Luvuallways You have helped Me tremendously, & for the rest of You All, I'm glad I'm not alone; I have the Sickle Cell Trait & have been experiencing the same exact pain as You All; Now I know what I need to do, Thanks so much for the comments & replies, They have helped a lot!!!!

  • I have had some Dr's say I have sca and some say beta thalasimia and some say sct.... I know I'm not crazy and I know how I feel I just wish someone would listen....

  • Hello, I can truly relate. I found out I had the trait when I was about 47. But I had suffered from joint pain, stomach pain way before I was diagnosed. My cousin passed away of full blown sickle cell and her daughter. Her sister has sickle cell and it has been very difficult for her but she is strong.  I have never know what it feels like to live day to day without pain and discomfort Ever!!! I don't think anyone knows how it effects you psychologically. I am not crazy... My pain exist. Doctors can never find anything. This is bullshit!

  • I just had a baby ND was told he has the trait as well but neither myself or the father has the traits. I took him to his pediatrician and they tell me it has to come from one or the other right. So I'm all confused trying to figure this out but what makes it evenmore crazy is my other 6 children don't have it but has had so different types of anemia am I going crazy ?

  • The doctors are right in that the condition is inherited DIRECTLY from either one or both parents. There is no skipping generations as far as the decades of case studies and research is concerned.

    If you are in the UK it is most likely that you have been tested for this in your antenatal stage and you would (well definitely should have been told and it documented). You having been tested and assuming you are negative means the hospital would not have invited your baby's dad for the test as far as I'm aware. The gene not having been passed from you then means it would have to be baby's dad that has passed this gene trait on to your baby.

    If your baby's dad was born outside the UK he MAY never have been tested.

    If your baby's dad was born in the UK BEFORE about 1990 he MAY never have been tested.

    It maybe he has been tested, has the trait and its on his medical records and he just doesn't know.

    It'd probably be advisable to have a chat with your GP and maybe firstly request they retest you, ask them to explain the facts around the condition etc.. and take it from there. Having the trait for your baby means he or she will need to be aware that they carry this gene for when they are older for various situations and health reasons.

    Best wishes

  • We both are negative however I do have issues with iron and anemia

  • I wish that our Sickle Cell Associations would get more informed regarding the trait. I too suffered until the age of 44 of debilitating issues to be told by an association that I had a chemical imbalance. After another crisis, I was diagnosed by an internal medicine Doctor of sickle cell trait with complications . I now have an appointment with the head of hematology for one of the largest hospitals in the country. My friends niece just passed at the age of 14 due to a rare kidney cancer that is found with those with sickle cell trait. Do not ignore the pains...see a specialist!

  • Hi I feel better reading all your posts I have sickle cell trait and am made to feel by the doctors that iam nuts or a hypochondriac! I have severe pain in my bones when it's cold which doesn't help I work outside in winter but an ignored iam currently seeing specialists as I have kidney pain which they can't diagnose not stones gets better with antibiotics but not an infection! Now there saying it's not my kidney they think it's back pain go see a back specialist instead. I only ever drink water but get so thirsty all the time if I drink anything else I just have to drink water after as iam still so thirsty. Whenever I mention to the doctors I have sickle cell trait they just say is not that straight away that causes no symptoms but they can't find a reason for my problems. So iam just left in pain and made to feel like Iam trouble and a liar. I ask to see a blood specialist and they refused as unless iam planning on having children it doesn't affect me. I live in England has any one found a good doctor that will listen to them and understand? Thanks

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