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Sickle Cell Society
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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

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Thank u so much you help me a lot

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Far....... from the truth! ☹️

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I agree people a freakin dieing of sct

I have the trait and im in pain all the time.i cant even walk properly.they are talki ng RUBBISH

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Same..I left mission hope center crying today the doctor said he don’t know what to tell me and literally walked out the room

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I totally agree! I have SCT, and I am in pain all of the time as well.

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I agree. I have the SCT and I am always in pain for some reason or another. Abdominal pain usually. Sometimes to such an extent that I faint.

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I really wish that they would stop telling people like us with SCT that we cannot have crises because we only have the trait. My son and I both have the trait. My son has been from from one doctor to another and have been told the same thing: "Your joint pain is not from the trait. We don't know what it's from but it can't be from the trait because the trait does not cause crises." Excuse me, but that is BS (not sure I could say what I really wanted to say. LOL) I have finally found a doctor who believes him and is willing to find out the source of his pain.....and he is being referred to a hematologist. Don't stop searching until someone believes you.

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I am not an expert in sickle cell but I know about it and the cause of pain which is the sickling of cells blocking the blood vessels. People with trait can have pain crises because they have some sickle cells and depending on the condition which can be affected by a variety of factors the sickling can be worsened and can cause more pain and the frequency can also be affected. A lot of my patients have sickle cell trait and have comorbidities which predispose to pain crisis but as far as severity, the sickle cell disease is more serious and can have more episodes of pain crisis than the sickle cell trait.

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BTW I fully believe that the SCT predisposed me to my current diagnoses of lupus, neuropathy, two heart conditions, and more. No doctor will believe me, but yet they tell me that SCT does not cause crises. SCT causes crises. All of us cannot be wrong.

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I agree I had a crisis so bad when I turned 9 and that's when it came out that I had the trait,if you can die from it you then you could have some symptoms I believe,I'm in pain all the time,some days I feel like my joints are gonna break..scares me.sometimes its hard to breath..I get pains in my stomach and in my joints....it all depends..im so tired of being looked at like a junky or like I'm crazy because I'm in pain...and know I am and its not imaginary it real and I find some peace that others understand and feel like I do too..I hope research changes things because its unfair to us with the SCT..thanks for your post

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Wow. I'm so surprised at the amount of people that are having crisis with trait but also that some doctors are not acknowledging that it can happen. On another page some people reported that the doctors can do a test to identify the percentage of RBC that have the potential to sickle. For some people it might only be 30 but people who were having crisis had about 50% potential to sickle cells. So this might be why some people SCT are experiencing crisis. I am a trait and have never had any symptoms but I find I am waay more sensitive to dehydration and the cold so am excessive with preventing both.

Clearly certain areas/countries doctors aren't specialised but definitely worth some of you that are being asked to ask about this test.

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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...

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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.

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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 ?

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That's because SCT is not a monogenetic trait. It is combines of several traits. So you got some of the ingredients from one parent and some from the other combining to give you the trait. Two people with the trait stand a 50% chance of passing it on to their children.

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Same here. My parents don't have it either

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Thank you for posting

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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. 

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Hi, its nice in a sense to know that I'm not the only one who feels that way I dislike how all my doctors say is exercise more and that doesn't take me anywhere but to a place of pain in joints as well as lungs, wanted to ask you when u jog or run as you loose breath do you also feel a burning pain in the chest right where the heart is??? In advance thank you for your answer.

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I had that twice..just diagnosed at 33 with the trait..I’ve had at least 20 pain crisis..shortness of breath..tingling and swelling hands and feet..sore legs..lower back pain..every single symptom of a horrible pain crisis..been to the hospital 5 times this month and missed 7 days of work..but I’m lying 🙄

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Exactly! That's crazy that they say 45% that can change .. in the right conditions trait can go full blow.. so I've read.. and that's why my sister was discharged from the air Force.... You know when your gonna pass out.. there's more than 45% in your blood..

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Im also a sickle cell trait & surprised the military didnt pick up on my blood count unless it was below the radar. It wasnt below the radar when i had to get a physical to join the airline i now work for since 1988.

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Sadly sickle cell is a disease of degrees. Like many genes, expression depends on more than the original gene site. As a result expression of sickled cells can vary significantly between individuals. For example people with higher fetal hemoglobin or other types of nonstandard hemoglobin have less sickled cells. In addition diet, fluid consumption, and other genetic conditions many acerbate the problem.

Drink plently of water and avoid working out at any significant elevation. If you do experience sickling take an anti-inflammatory like Advil.

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I know what you mean. We are basically told nothing is happening to us but the pain is real... nothing I imagine, like those with the full disease but painful none the less. I have been having server leg pains on and off from the time I was four. The pain now as an adult isn't as bad as it was when I was a child but it does slow me down. One time when I was 13 my left arm hurt so bad it went numb. I went to the ER and the doctor found nothing but mentioned to me that I had sickle cell trait. I really believe we do have symptoms but aren't taking serious.

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This disease i mainly african but theres eiropeans with this disease if this disease was dominatwd by europeans i wonder if they would ignore us.im in pain as im typing.im goint to take a paracetamol and lye down.its terrible.i cant even walk properly

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Europeans do get the trait. Those from Southern Europe can have it because there are mosquitos there. However ignorant doctors turn around and say because they aren't black they can't have it.

They also tell Asians who live in or come from mosquito ridden areas that they must have thalassemia when in fact they can have sickle cell disease or trait, the same thing.

In short many doctors are thick and don't realise if your ancestors however close or far come from an area with mosquitos you can have sickle cell regardless of ethnicity.

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Yes robinr78, the pain is very real. I have sickle cell trait and also have a lot of pain. I have pain in my arms and chest it is unbearable sometimes. All doctors should take these symptoms more serious because a person with sickle cell trait does have crisis and they shouldn't ignore patients concerns with sickle cell or sickle cell trait.

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I read this article some time ago.Maybe you will find it interesting scientificamerican.com/arti...

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I too have the trait and experience the very bad aching legs, shortness of breath and always feeling cold especially the winter months. If it's just a cool day then I'm shivering. Which are SOME of the symptoms my grandmother had and she had sickle cell anemia. So I need the researchers to stop saying that ppl with the trait have no symptoms because it's LIIESS!!!

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Yes, they really need to do some research. Every couple of days, I'm in pain and have to rest. I have the trait myself but I get a lot of symptoms - pain in my legs and joints, burning and tingling sensation in my feet, etc. I feel like I don't have an active social life. Most of the time I'm tired.

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Oh wow, you just explained How I feel

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Other websites provide more information and the US Army is well aware because of a 1981 study done on recruits who were dying or having serious issues during boot camp. A former Pittsburg Steeler was sidelined whenever they played in Denver because of it.

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Woahh. I know this is an old post but there's just so many different interesting stories. That's really close. It just means that 43.5% of your RBCs have the potential to sickle under any extreme circumstances. Have you found that better hydration has helped reduce pains arising. It's more dangerous to be going into high altitudes because you can't control the O2 that you're getting so you could potentially havr a crisis. When I was studying midwifery there were a few rare cases written where people would have a crisis when e.g. skiing

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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 ?

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Make sure there was no switch in the hospital and get both of you re tested and double check DNA of parentage. Make sure the baby is really belonging to you and your husband. If that’s not it , your case needs to be written up because SCT is genetic. That being said there had to be a time when no one had it and then someone developed it. All is Possible. We are not our own creators

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I totally agree I have anemia and pain crisis as well I was even said to have sickle cell while carrying my 3rd child. I know I've had the trait but I believe the trait leads to other things like your diagnosis and SLE

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Its politics the NHS is in crisis and they dont want to treat sct witj strong oaijn killers. They would rather give you wrong diagnoses. Plus i dont think they care that mich they know that people die with the trait and develope problems but they dont care.now they arw brike its worse

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It is nothing to do with that. Doctors do not believe patients even if they are PhD scientists who point out their knowledge is out of date on an area.

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I agree... Both my parents were tested and dont have the trait but I do...

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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

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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.

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Hello randim, I as your children have horrible nausea, migraine and chest pain when on altitudes running or even going down the stairs in my parents house, yes resting makes it somewhat better both my parents are carriers, my question to you is besides resting is there anything else that helps your kids? In my case my migraine will not go away very easy most of the time I'm under some kind of medication. Any advise would be awesome thank you

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I have the Trait and have crisis due to weather change, stress. My Hematologist said that people that are trait carriers can be symptomatic.

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My partner says horrible things about the Sickle Cell Society due to them not serving people with the disease and trait.

The Sickle Cell Society should be asking for donations for research into the area, and engaging with research scientists and at least a couple of consultants.

I belong to another charity who were initially a patient support group for a different disorder that is badly treated by mainstream medicine. They have research scientists and a hospital consultant doing research in the area. They use members of the support group as research subjects if they match the research criteria for some of their studies. There studies look not only in the medical impact but the social impact of the condition. They have a few vocal members who get themselves in the national and regional media. Every year they have an annual conference held at a university somewhere in England.

The Sickle Cell Society does absolutely nothing in comparison and they have been going longer.

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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

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This is exactly what dr. Need to stop saying! Serious research needs to be done!

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Okay, Even though it is uncommon doesn't mean it doesn't happen. NFL player Ryan Clark had symptoms from the sickle trait and Had to have his gallbladder removed. I am also having symptoms from sickle trait, arm and chest pain and other joint pain. What is uncommon and rare can still be possible and show symptoms in people we least expect. Some people with trait can have symptoms. We don't have to have the disease to have severe pain and crisis.

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You all really need to stop telling people what you assume people know what they feel how long they've been feeling it and what they go through you're not inside of anyone else's body so you can not say that it's highly uncommon also way too many people are going through for you "DOCTORS" to say it's uncommon I mean do any of you have any "COMMON" sense people are suffering while you all are kicking your opinions around.

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It is uncommon but we exist. I was told my entire childhood that my joint pain was arthritis until I was 18 when a doctor at Kaiser who was a specialist in the study of Sickle Cell Anemia told me that I was an AS Sickler and did not have arthritis.

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Please stop spreading this misinformation. Check the research more thoroughly. Her joint is probably related to trait. If Ppl can die from it ‘under rare conditions ‘ and have crisis y would her joint pain not be from trait? This is why Ppl with trait cannot get good medical care. If our own refuse to acknowledge it, who do we have?

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from John Hopkins University web-site: "The defect in urine concentrating ability in persons with sickle cell trait is thought to result from intracellular polymerization of Hb S in erythrocytes, leading to microvascular occlusion, in the vasa recta of the renal medulla. Reasoning that the severity of the concentration defect might be related to the percentage of sickle hemoglobin present in erythrocytes, Gupta et al. (1991) studied urine concentrating ability in 3 classes of A/S individuals, those with a normal alpha-globin genotype and those who were either heterozygous or homozygous for the gene-deletion type of alpha-thalassemia. They found a correlation between urine concentrating ability and the percentage of sickle hemoglobin, which was highest in the individuals with normal alpha-globin genotype and lowest in those homozygous for the deletion." [source: dnai.org/media/bioinformati...]

These are medical facts. SCT is a disease. It damages our bodies which we feel to varying extents but the damage is occurring. And it’s made worse if we pretend we are normal and live like most people. No we have to drink more water and take breaks and eat very healthy. Take folic acid. And if that all fails we need fluids and pain medicines just like SCD

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hi. my name is angel, i am 30 years old with sickle cell trait... i suffer from anemia, thyroid problems, dizzy spells and trouble breathing at high altitudes, bone pain and severe fatigue... now im aware that apparently we are not supposed to have symptoms.. but can you help me understand whats going on?? i eat very healthy with a balanced diet. i dont smoke and have had 5 child losses.

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Hi I’m no doctor so I can’t comment on the appendix portion but I totally disagree with you not having pain crisis. I’m 42 years old and have known about my trait for many years as well and throughout my life I have experienced pain that I’m more than positive has to do with the trait. My son n law has sickle and everything he experiences with pain is the very same as mine. I don’t think our is as bad because we don’t have to be hospitalized but we definitely have small crisis that we struggle with because no one will listen.

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I have Sickle Cell Trait as well as 4 children 3 grandchildren. I have eight children. I am published in the area of Sickle Cell and having the trait does cause crisises. It does cause pain in joints in the bones in the legs. It can make you go blind as well as affect the kidneys. Seven out of 12 had Sickle Cell Trait in my mother’s Family including my mother who all die in their fifties and sixties. My brother died at fifty five.

I had rubbed many legs and arms in my life with my children grandchildren. I cannot sleep often when laying down because of the pain in my legs and arms. There is a lot of medical professional out there who have no clue. Maybe if they had it they would change their mind. Sickle Cell Trait is a disease.

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I have sickle cell trait. My blood level is always dangerously low. Hb 6 g/dl. I have headaches almost all the time. when I go out I get headaches and leg pains so most of the time I just stay at home. I frequent get dizzy when I get up and my vision becomes blur for a short time. I get pain in almost every part of my body but they are usually short lasting and for that they are somehow bearable. If this is not crisis then what is it? I think complications are possible to even carriers and it's about time they stop ignoring us.

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That is not true, people with sickle cell traits DO have pain. I wish people who do not have a trait would stop assuming we don't have pain. I have pain with crisis, and my father was in the hospital for a sickle cell trait with severe pain and died in the hospital. If you do not experience having a sickle cell trait please do not tell people they are not experiencing pain from crisis, because if you have a trait AS or SC you have pain.

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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

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Thank you so much for ur post!!

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

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Thank you I know I'm not crazy

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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.

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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

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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.

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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!!!!!!

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

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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.

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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

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My daughter is 8 yrs she has the trait. She fainted over the summer, was always complaining about her legs hurting. The Dr said that she is very tall for her age (4'10), that it is just growing pains, that she needs to intake plenty of water. She complains about her stomach aching a lot. Her leg pain comes and goes. Dr said sickle trait does not come with symptoms. I'm not sure I believe that now. Is there any test that I can suggest? It hurts to see my daughter in any pain, mainly when I have no control of the situation, feeling helpless.

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Thank you do much. I think doctors seriously underestimate the symptoms that we have. In my family everyone has the trait (my father, my aunts, my cousins, my sister) and in every case it is symptomatic. I have been in pain my whole life since I was a kid but thankfully most of the time I can manage it with ibuprofen and a lot of water. I also found out that if I have joint pain in my legs, lifting them helps a little bit (maybe because it changes the blood flow). I had one doctor look at my blood work and dismiss the trait completely! *I* had to point him out that my blood test indicated that I have sickle cell trait and he said "oh, right." Had I not known how to identify the disease, I would have believed I was OK. I wonder how many people with the trait never even find out that not only they have the trait, but also that it may be the reason for "unexplainable" pain. I am pretty sure that if only sickle cell trait existed and the complete disease was not so horrible, doctors would actually pay attention. I guess someone once thought "oh they could have this almost lethal disease and they do not; They should be thankful and not complain," and began spreading that bs that we are *ALL* asymptomatic. If that was true, there wouldn't be a study showing that athletes with sickle cell trait are at risk of sudden death. I do not about those doctors, but a disease that may cause sudden death in apparently healthy people SHOULD be taken serious.

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Agree a disease that causes sudden death needs to take more seriously before people with Sickle cell Trait die and have other serious problems.

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Thanks for the info

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I really wish physicians and hematologists who look after people with sickle cell disease (SCD) will moderate this page so that right information can be availed to people. I am a 64 year old with some medical knowledge being a hospital pharmacist and have sickle cell trait (SCD trait) too. I come from Nigeria where not less than 50 million of her 180 million population have sickle cell trait. It is also well known that population of persons who suffer from malaria are highest in Nigeria.

I do not just understand where this idea of SCD trait people are sick people came from. People with trait are well please. It is a hypothesis that when they go to very high altitudes or subjected to some stress, they have crisis. Even people who have homozygous AA do get ill in same stress situations. I do not think it does anyone `s psyche any good to make SCD trait persons sick people.

Please can the administrator of this group get an experienced physician to enlighten all of us about this?

Thank you.

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I have to disagree with you! Don't assume or think these SCD trait people are not suffering some SCD issues because you are a Nigerian. If you don't go through it personally you will never be as informed as people like us. I am Nigerian with sickle cell trait and I have suffered for so many years, excruciating pain in my limbs, chest and back, fainting spells, stubborn anemia that nothing doctors have tried (iron therapy, infusions, transfusion) seems to help ...and one of my doctors did comment that at some points my blood test results show much "sickling" of my red blood cells...BUT I am an AS. Yes, SCD is recognized as a chronic health disease and is good that it is treated seriously as such. However, it is time researchers, the Sickle Cell Society and many other advocacy groups take the many SCD trait people who are suffering major symptoms seriously. All my life I have been sickly and still no one is putting two and two together except we the sufferers who are on forums like this asking for someone to take us seriously and prevent complications that do occur in some SCD trait people.

The "experienced" physicians you are calling on to "enlighten" us need to pull their heads out of the sand and take a serious second look at evidence we are all putting forth. Those who do not live in our bodies cannot tell us it is a hypothesis. IT IS NOT! Genetic conditions are not as cut dry as you think it is. I am tired and frustrated with too many doctor's visits with no clear answers even when they see all the indications in the blood tests -- where are the diagnostics geniuses and brilliant geneticists??

SCD trait should command attention due to Exertional Sickling, Renal Medullary Carcinoma and other conditions (hypertension, diabetes, etc.)

This is just one of a few research papers out there - it is 1991 but it's obvious enough ncbi.nlm.nih.gov/pubmed/186...

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To Oloh, the Nigerian Pharmacist.

Pharmacist my foot.

How dare you?

How dare you say and I quote “ Can the administrator of this group get an experienced physician to enlighten all of us about this?”

You must be mad!!! Are you telling us we are all crazy and don’t know our right from our left.

It is evident that you are the ignorant one here, the fact that you have SCT and don’t experience pains and symptoms, count yourself lucky and thank God. However, it does not give you the right to say we are all lying.

SCT, SCD and SCA all have degrees and we are all different, that’s why even twins do not have the same DNA.

Get that into your skull and do your research well.

It is annoying and painfully that the doctors and the Sickle Cell Society will not do new research other than the outdated results they have regarding SC and stop playing with peoples lives.

I am also a Nigerian with SCT and have symptoms and been in pains for about 13 years now.

I realised I have SCT at 26 years of age after been hospitalised at Lewisham Hopital for a brief illness.

Before this, my childhood in Nigeria was not very bad apart from frequent abdominal pains, headaches and malaria bouts.

But after having 3 children, in 2006 it started full force....full body pains, from shoulders to my legs, migraines, lower back pain and general fatigue.

In 2011, I took my children to Ireland on a visit boarded a plane. ( Aerlingus or Ryanair)

The next morning, on waking up, I couldn’t move my legs or arms.....

From other people’s experiences, this could be related to the pressurised cabin air and high altitude, but you ignorantly call this a hypothesis!

Since then, the rest is history, I can’t remember the last time I feel healthy or normal again.

I have done series of blood tests/works, X-rays and MRI all to no avail....

Nothing seems to be wrong with, nothing is found from the series of these tests.

I am tired and I cry almost everyday, my children take turns to rub my legs and cry with me.

I am on daily drugs and supplements and do what I can do to cope with this pains almost every single day of my life.

But you have the audacity to tell me and others just because you have SCT and you don’t experience symptoms and pain like us, then SCT has got nothing to do with our wellbeing...... you are NUTS!

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

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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.

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

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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.

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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

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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.

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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.

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Did you get your results, and what do they say about sickle bata thalassemia? A few years back i got a diagnosis...but didnt know what it meant. Now 15 years latter im trying to figure this thing out. I want to find a doctor who understands and can work with me.

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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

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

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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.

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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!

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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

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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.

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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.

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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

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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!!!!

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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....

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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!

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I agree! I'm 39.. and I have known I have sct since my teens.. I know nothing about it.. I hurt all the time.. someone told me it sounds like I have fibermyalga whatever it is.. and then I thought... I do have sct.. I'm lost tho.. I know nothing.. Except how I feel and I'm tired of it

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I agree Ive been in pain since childhood was dianosed again in 2002 for Sickle Cell Crisis

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None of my siblings have it.Why?

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Same here...I am 35 years of age and I have gone my entire time through Grammar School having pain crisis...Not knowing what it was. I too was told I had SCT in 2002, while pregnant with my son. I now sometimes suffer with pain crisis. I have pain in my lower back which flows to my hip joint and then my thighs. I too was told by a doctor that I had arthritis...Smh. We definitely need someone(professional) to do more research.

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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 ?

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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

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

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It can skip .. but it's on one of the parents sides.. 1 of my 3 kids have.. myself and only a few of my siblings..And mother have

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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!

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Hello, I have sickle cell trait also and I agree with you the sickle cell association should do more research,because more people with trait have pain and problems with trait. Also there have been people who die from trait. I have had problems with trait and I still have a lot of problems with sickle cell trait.

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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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Most people with the trait have issues and not to mention you will only live until you are about 64. I have had eight children most have the trait and they all experience pain daily, leg and arm pain in the night, anemia that is controlled. New stem cell will eradicate Sickle Cell disease. Don't let anyone tell you that you do not have the disease with the trait. At any point you can lose your sight, have a stroke and die from the trait.

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"Don't let anyone tell you that you do not have the disease with the trait. At any point you can lose your sight, have a stroke and die from the trait." What????

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So true oloh at anytime anything can happen to you with trait and you can have disease or really serious issues. I have had a lot problems with trait. I have continuously chest pain and joint pain. Can any help me with finding an cheap reasonable oxygen tank? Hope all is well with you.

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I have the trait and since my teenage years I have been fainting, wake up with the worst headache and body feels like it was hit by a truck. The docs could never tell my parents the cause. Hadn't had an episode in years. I had one 1/21/17. Went to the women's march, walked 10 miles, didn't eat or drink a lot bc there wasn't enough facility for the crowd, at least an hour wait. Got on the bus, crisis began. First clammy feeling, sweaty, body numb, faint, come back and feel like I explained above... Took a couple of days to get back to close to normal.

So I know the feeling...

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Sorry this happened to you. I have a had problems chest pain, leg swelling I also been hospitalized with sickle cell trait. Hope all is well with you.

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I am 39 years old and I were told I only had the trait , afterwards I started getting sick in so much pain thru ought my body and was told I was having pain crisis,further learned I had sickle cell anemia,all I know every other month I'm in the hospital sick with pzin and have to get treated for having sickle cell pain crisis

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Stress is a trigger too... So I've read..

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Hello, kind of new and found this site in my search for answers. I have sickle cell trait and alpha thalassemia. I am also anemic. I have pains each month that are so excruciating I cant move or do anything. Feels like shattering glass in my legs, arms, back and chest. My spleen gets a little enlarged to. I also feel like short of breathe accompanied by terrible migraines, The doctors look at me like a drug addict and say the trait causes nothing. They take test and all are negative. But as I read post I know I am not crazy. my vit. D and b12 was also low. I am noticing a trend of low vit. d and b12 with those of the trait. I don't know where to get help. I get these crisis every month and I have been going to the ER for the past 2 years each month. Please input

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Hello JO190 I am sorry you experienced this, I also have a trait and low vitamin D levels. I have had low vitamins and after reading it is more common for those with sickle cell trait to have low vitamin level because we have sickle blood cells. I have a lot of chest pain and I have had problems with my oxygen levels. Your story brings aware of things those of us with trait endure.

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Although i too have sickle cell trait i normally havent had any symptoms except as of late i seem to tire easily esp. When climbing stairs in which i get winded although i used to be athletic befor having knee issues which require a knee replacement to be be determined at a later date.

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Hello

I am 49 and have the trait also. They say its nothing but I have unexplained pain too.

Maybe the sickle cell trait can cause a PART TIME CRISES!!

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Look there are many other conditions that can cause body pains bone pains etc. Pls ScTrait is not a disease

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Where is your research?

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It may not be an disease but sickle cell trait is a blood disorder that can cause complications and problems in people that have it. Each person is different some people with sickle cell trait are more stymomic than others with trait.

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I had stomach pain when I was a little girl that's what happened to me .......the removal of my appendix!!! Ended up being SCT crises nothing was wrong with my appendix 🙁 You need a good Hemotologist!!!

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Sct- have a sensible diet. Drink loads of water. If you exercise make sure you replace the electrolytes frequently. If the pain can not be manage with over the counter medication. Seek medical advise. Remember the medical profession can not treat sct . They can only treat the symptoms which you are presented with. You may need to change your life style to manage your symptoms . SCT carriers see you self as delicate flowers. look after your self. From Sct carrier 45% and still learning

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I have sickle trait and so do two of my daughter's we do have pain crisis that we can't even walk I am 54 yrs old I do hurt sometimes both legs and my doctors too a doctor too me sometimes 50 percent of my blood is sucked and sometimes 70 percent so yes we do be in pain unless you are me you don't know my struggle me and my daughter's hurt it's not in my head sickle cell trait hurts too

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I’m having a crisis right now I’m so irritated...if I go to the hospital it’s a ln I’ve fluids and pain medication that knocks me out..then I’m in pain again before I leave hospital..it’s the most annoying pain ever

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I know the feeling , I have a lot of pain in body and chest because of trait. Doctors do the same for me give me medicine and fluids but nothing seems to work, what I have learned is because We have trait are bodies don't produce a enough oxygen which causes us to sickle and have a pain.

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I have SCT and my daughter has SCD. I have had pain crises several times throughout my life. The last time was 12 years ago after I had my daughter. My legs hurt so bad. Doctors lie to the general public when the say that people with SCT have no complications. Studies show that ppl with SCT have an increased risk of anemia and kidney issues. I have been anemic my whole life.

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So True Doctors lie to the public because people with trait can and do have complications, more research needs to be done.I have also had and still have problems with trait. Hope all is well with you.

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Does anyone else experience profuse sweating even when participating in mild activities? I used to sweat buckets when I'd go out dancing. Now, just being in a club does it. The worse is when I get out of the shower, I have to towel off 2-3 times as I'm getting dressed. I'm talking dripping sweat.

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I don't have problems with profuse sweating but it sounds like this could be related to sickle cell or sickle cell trait and another disease or condition.

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Well there are many ppl with SCT who would definitely disagree with that because even if you are suckling 25%, that is still sickle cell but these specialists only want to diagnose the disease and crazy thing is there is no cure and treatment especially in north america is garbage and very few if any clinics actually specialize in just Sickle Cell Disease but there are different levels of of it. And those who are enduring the pain every day, tell them that what they are feeling is not SCT. Instead of comparing one patients pain to another, how about coming up with a cure for yes the "Black" Disease! As God says "one fine day, the last shall be the first and the first shall be the last! For majority of us that day cant come soon enough.

#sicklecelllivesmatter

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I am 40 years old and have tested positive for sickle cell I get pain episodes, bottom part of my lungs have collapsed i have pulmonary blockage and my red cell count is below the basement level, dont let anyone tell you you are imagining things! We are the ones going through it everyday. These ppl called specialists only read from books, experience along with Knowledge is Key! My cousin's ex wife just died from sickle cell at 49 and didnt get her first symptom til after she had her last child in her late 30s. SCT, SCD, SCA, all the same! Only God knows when we will be cured. Until then I see a naturopath and get IV Treatments, ALA and Glutothyone. And Vitamin & minerals all through IV and I use CBD oil, it's used also as an anti-inflammatory; pain free 8-12 hours, but it's not cheap so they put me on morphine when I run out. But I hate that stuff and I cant get a blood transfusion because my hemoglobin is just in the basement but not in the toilet yet. God is my Rock and my Fortress in this challenging time. Keep the faith my friend! I hope some of those tips helped and I made you laugh your pain away a bit lol.

God bless

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