Sickle cell trait but leg pains - Sickle Cell Society

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Sickle cell trait but leg pains

Staceyg profile image

My daughter ( she’s 8) has sickle cell trait, never really has any problems but recently she complaining of leg and feet pain, she says it just comes and goes sometimes when she’s just walking? Could this be due to the sickled cells?

79 Replies

If she's only got the sickle cell trait, then I don't think the leg pains has anything to do with Sickle cell, I've got the full blown sickle cell, my younger sister has got just the trait and she's as strong as a bull, my four year old daughter has also got the trait, she only gets the cold and flu, she is strong too.

Are you sure your daughter has only got the sickle cell trait, have you had a blood test done to know what her blood genotype is?

LupusDiva45 profile image
LupusDiva45 in reply to Rotimi2

I do believe that one can have the trait and have crises. I have the trait as well as my youngest son. He always has joint pains and heart issues, and every doctor keeps telling me that the trait cannot do that, yet they have found no other explanation. I have several autoimmune issues and I fully believe that having the trait has predisposed me to these issues. I have seen too many people on here with the trait and having crises, and having people tell them that the trait is not causing them. There needs to be more education on this issue. Every body is different, and every body's experience with the disease or trait is different.

onwa70 profile image
onwa70 in reply to LupusDiva45

YOU CANNOT HAVE THE TRAIT AND HAVE CRISES!! YOU CANNOT HAVE THE TRAIT AND HAVE CRISES.You need to stop thinking too much and relax.Only (SS) can have crises.

Your doctor is right.

RadiantSue profile image
RadiantSue in reply to onwa70

Dear ONWA70, How can you be so sure? Decades ago, the medical community did not know of that the interactions of sickle cell trait with other hemoglobinopathies could cause crises, but know they know it does. What if some of use whose only hemoglobinopathy is sickle cell train experience crises because of some other anomaly in our physiologies yet undiscovered? Medical research has no yet explored every comorbidity or cross-interaction of even mild medical conditions with sickle cell trait. So, how can you be sure that someone, for example, with an extremely mild form of asthma and sickle cell trait might not experience full blown crises when the body has been weaken by stress, surgery, accident, cold, flu, pregnancy, dehydration, overexertion, dietary deficiencies etc. How can you be so sure that some of us without a full blown sickle cell syndrome having only the sickle cell trait do not experience sickle cell trait crises? Two facts are document after sickle cell trait (AS hemoglobin) patients. They can go into crises when: a.) flying in unpressurized cabins, b.) exercises at the extremes of human endurance and c.) Renal Medullary Carcinoma only affects sickle cell trait patients (source: I know some with sickle cell trait have no symptoms at lest that they are aware of; however, some of us have in fact had crises. When I describe my symptoms in the middle of a crisis to a sickle cell anemia patient with the full blown disease there are sensations and challenges and coping strategies that only someone who has been there can know. I have always been treated with kindness and respect my sickle cell anemia patients. I ask you to keep your mind open to the possibility that some of us with "only" the sickle cell trait do have crises.

Laddylowe profile image
Laddylowe in reply to onwa70

But yet we can die from it just like people with the full blown disease,so tired of people saying what we feel.

Snoop_26 profile image
Snoop_26 in reply to Laddylowe

Yes I hate that they will not do more research because I’ve had leg pains since I was young and it gets sooo bad that I’m in tears I bought leg compressions to help ease the pain but I’m with everyone else stop telling us what we feel

cpatt45 profile image
cpatt45 in reply to Snoop_26

I have struggled since childhood as well and still have crisis!

LupusDiva45 profile image
LupusDiva45 in reply to Snoop_26

I understand how you feel. I was recently in the emergency room due to swollen legs and a very hot calf....turned out that the blood was not circulating well.....I only have the trait yet just enough of the sickled cells found a way to clump to cause a crisis....which we are being told should not happen because people with SST do not have crises. I have also been told to wear compression stocking because of it. Hugs!

Laddylowe profile image
Laddylowe in reply to onwa70


Kel2008 profile image
Kel2008 in reply to onwa70

That's not true.

LupusDiva45 profile image
LupusDiva45 in reply to onwa70

Just a few years ago lupus patients were told that you have to have a negative ANA to have lupus. Today, doctors are realizing that that is NOT TRUE. Doctors are not gods. They do not know everything. Many of them will tell you that. They PRACTICE medicine....and are learning more and more each day and with each patient. There have been several people (famous people) who have died from complications relating to the trait only. Please be open to the possibility that simply because some has JUST the sickle cell trait, that the or she is not having crises.

wholynicoli profile image
wholynicoli in reply to onwa70

I have the full disease and I am SC. And for many decades I have heard of people with the trait having problems

amysassy profile image
amysassy in reply to onwa70

This is not true they are now finding that people with the trait have symptoms as I wad told by a top London blood doctor who is up to date on latest findings unfortunately I have hbd and not hbs so they still say my strain have no symptoms as not enough people with hbd have been looked at

Diamondlyfe16 profile image
Diamondlyfe16 in reply to onwa70

This is so not true...i know 4 people who have had the trait and all 4 had the same issues as ss and all four are not deceased... All 4 blood clots that started in their legs and migrated to heart, lungs and brain.

Pmade1 profile image
Pmade1 in reply to onwa70

That isn't true, I have sct and have plenty of crisis directly related to my sct.

temtem profile image
temtem in reply to LupusDiva45

Only SS can have crisis. A number of things can cause joint pain i anyone and yes you are right everyone is different but medically I don’t think the joint pain has anything to do with him experiencing crisis pain.

christiLuv profile image
christiLuv in reply to temtem

Your statement is not true. Poor oxygen can cause SCT individuals to suffer pain crises. It's been happening to me over twenty years since high school from over exertion during track and dance. Chest pain and leg and arm pains. High altitudes from flying and visiting a high altitude location caused me to experience constant swelling and pain during my entire trip. Extreme heat and humidity compromises breathing as well. There is much research being done now but doctor's need to pick up the pace and educate themselves did that we can get relief and not be dismissed for our symptoms and crises.

Jsears1 profile image
Jsears1 in reply to christiLuv


Kel2008 profile image
Kel2008 in reply to christiLuv

Exactly which is why even those like myself who have the trait need to inform medical professional that we have this condition before we have any medical procedures such as anesthesia for an operation or even dental procedures.

It amazes me how people can say that one cant have a crisis just because we have the trait. That's ridiculous.

Luvnuallways profile image
Luvnuallways in reply to temtem


This is NOT true. SCT or AS can have crisis and can die from said crisis. In fact they are more likely to die because the crisis goes unrecognized Because Doctor erroneously think like you. That trait cannot crisis. So even though they see obvious crisis presentation they keep looking for something else which is not there. And the the treatment is wrong so the patient dies

LupusDiva45 profile image
LupusDiva45 in reply to temtem

Actually that same doctor who said that SCT cannot have crises has now CHANGED HIS MIND. Imagine that!!!! People with SCT can have crises. They can even die from SCT as many people have done over the years due to the ignorance of doctors and others who feel that SCT can't have crises.

Hi. I'm new to the post. I am in my 50s, have the C Trait (30%), and have had joint pain as long as I can remember. My older sister said I use to cry and was inconsolable. At the age of 3, my sister said I was dancing around, and suddenly fell to the floor holding my legs and crying that they hurt. As I got older, I remember my legs crumbling and crying because they were in so much pain. Then, older people said you had cold in your legs. My mother used a hot water bottle on my legs through all of my adolescence. At the age of 12, my mother took me to a doctor who said I was looking for attention. He should have lost his license. The pains in my legs started in my knees, and crept up to my thighs. In addition to the pain, I was anemic and placed on Geritol to boost my blood. Eventually in my 20s, I grew out of the constant pain. However, new pains started to occur. My shoulders would hurt, my fingers and wrist would hurt. My ankles hurt, and would I had headaches and stomach pains too. In my 30s, I went to a Rheumatologist, who said I had Undifferentiated Connective Tissue Disease (UCTD). I have Rheumatoid and Osteoarthritis, Raynauds, Thyroid disease, IBS, and some other things.

Here is the mother was told all of her life, she had the sickle cell trait. When she would suffer with joint pain, the doctor told her she had bursitis. At the age of 65, the doctor's discovered she had Sickle Cell SC Disease. SC had been confirmed as a disease many years before her diagnosis. However, no one appeared to know until she went into full blown crisis. The doctor's were amazed my mother had lived so long, and was able to have children. My mother had many of the crisis type things associated with SS Disease, including a shrunken kidney. Her spleen had to be removed, and she started to go into frequent crisis the older she got.

Google a story on an African American soldier from the 1800s, who they discovered long after his death, that the single sickle cell trait he had (S), caused his death. He died from a sickle cell crisis. The research on his single cell trait is the reason why athletes have to be tested for the gene.

I say all this to say, yes, I believe that you do and can suffer from joint pain. I believe that having the trait, which is an autoimmune disease, has caused the other autoimmune diseases that I have. I have been in and out of the hospital most of my life. Oh, I'm borderline Lupus too. My brother and sister, all have some sort of immune issue. This didn't just happen as a luck of the draw. Keep an eye on your child, and continue to see a rheumatologist and a hematologist.

Kel2008 profile image
Kel2008 in reply to SandyJune

I 100% agree, I have sickle cell trait. When I was a child, I had severe pain in both of my knees. As I grew older I would still have pain but not as often, maybe once or twice a year.

I recently had not only in my knees but now in my hips to the point where I have difficulties walking.

I was diagnosed with minor osteoarthritis, 2 yrs ago but due to recent pain I have had to go back for a xray to see if this has worsened. I know this is down to Sickle Cell.

I have 2 boys, my eldest son also has Sickle Cell Trait. He was excellent at sports anything to do with sprinting or football he was amazing. When he was younger after playing a match most of the time I could expect him to be in such pain, that he couldn't walk, due to the severity of his joint pain.

It really annoys me when these medical professionals and others say you with sickle cell trait you cannot have a crisis because I know 100% it's not true and so does alot of people who have the trait.

YAAG profile image
YAAG in reply to LupusDiva45

I absolutely agree with you. Dismissing the fact that the trait could sometimes give one crises is not right in my opinion and from experience since I have had crises all my life just with the trait and alpha thal trait.

Luvnuallways profile image
Luvnuallways in reply to Rotimi2

Romini. Your siblings are fortunate then or they don’t want to complain because their suffering. May seem to pale in comparison to yours. However. Again scan the CDC website admits that you can have symptoms with trait. And just like with SS the symptoms are unique. They don’t fit any other disease process. Telling people it’s NOT sickle cell causes harm bc it keeps correct interventions from occurring and leads to long term problems. If a disease process can cause a rare form of cancer then it can cause problems short of cancer. And if it can cause death then it can cause problems short of death.

That is so true...your last sentences is what I've been saying. How some people think we can have part of a disease as extreme as SCD, a part that can kill you under certain circumstances, and we can't have any affects from having the trait is absolutely ridiculous to me.

Laddylowe profile image
Laddylowe in reply to Rotimi2

Everyone is different, and people with the trait can feel pain to.. I get leg, feet pains also.. And a lot of people on this site.

Yes it does. I have had 8 children and 4 with the trait. Sickle Cell Trait is a disease. I am published in a child development book. Things to be aware of is going into high altitude my son went up and ended up in the hospital and almost lost his spleen. Most doctors know nothing about the disease. I have suffered horrible pain in my legs, arms and when sitting on the toilet. My kids who have it suffer more pain then the others. They also can suffer with pain attacks that affect the spleen area. Some days my kids discribe it like they are trying to walk in water. We use supplements. Fish oil, D3, Vit C, flushing niacin. ( makes your face and body get red) Stay away from sugar and have plenty of vegetables. Meat is good. Berries are the best fruit.

Learning to take breaths thru the nose out thru the mouth to keep good oxygen. Keeping hydrated with lemon and being careful in excersise.


MarkMMays profile image
MarkMMays in reply to Omie11

I got sickle cell trait from my dad's side but my parents divorced, and my mom treated me like the fucked up naysayers on this page my whole life. This helped a lot just to calm my mind down from mistaking myself crazy. Prayers go out to your family

I hear ya I say sickle disease sickle trait all the same shit...but none of these doctors want to investigate or help traits grrrr!

No it is not if you have met someone with SCD then you will not make that statement. That is not to say SCT might not have pain but I don't think the hospital is your second home or that you have pain that makes you scream that even the strongest painkillers struggle to control the pain. So NO it's not the same. I will not terminate a SCT child but I will gladly terminate a child with SCD. Ignorance isn't bliss. I have SCD and all my children are of course SCT.

seamsbydeb profile image
seamsbydeb in reply to jo19

I know SCD is a terrible disease and we aren't trying to compare what we have with SCD by no means. We are just saying we are suffering too and not to have our pain and suffering acknowledged doesn't make it go away. I have been tested for everything under the sun and the only problem i have is the SCT. I'm having pains at this moment...ab, arms, legs...and they affect my quality of life. My weekends are spent resting just so I can work the next week. I know my body and I've been trying to get doctors to recognize that some SCT carriers have pain crisis, albeit less painful than a SCD patient, it's still pain.

Laddylowe profile image
Laddylowe in reply to jo19

You don't know what your talking about, how can you say what we feel

Luvnuallways profile image
Luvnuallways in reply to jo19

Jo19 during my last pregnancy if I was not bringing life into this world, I would have begged for death. I am AS. I was in the hospital for 3 months. Admitted for 3 straight months for sickle cell trait crisis. The crisis never stopped. I thought I was dying more than once and no amount of medicine controlled the pain. I didn’t know a person could experience so much pain and live.

But it is not a competition of who is in the most pain. And if something can kill you what makes you think it cannot make you scream with pain that even the strongest painkiller cannot control? TBH for some of us the hospital and /or day clinic are a second home. If we are lucky. For others laying in bed writhing and crying and screaming is the only option bc no believes trait can crisis. Truly crisis. Can you imagine that same pain you experience but with no treatment at all? No fluids. No pain meds. That’s what happens to many with SCT so the destruction to the body accumulates and the pain mounts to the point of persons contemplating suicide. New evidence shows there are some Hemoglobin S variations that combine with AS to make what seems to be trait on the surface but the S has even less oxygen affinity than your typical SS patient. In those persons the expression of their disease symptoms are indistinguishable from SS. In fact they are sometimes worse than the usual varieties of SS. Look up AS-Antilles and AS-onman. These are just two that have been recently identified.

As I stated in an earlier post, we have to support each other and realize we are on the same side. Rather than having an attitude of disbelief when people are already suffering excruciating pain and fear of even losing their life. Or watching a child suffer, unable to even get fluids or any kind of Care. It is time for us to work together and help each other.

Pmade1 profile image
Pmade1 in reply to jo19

That's not true some people I have known that have ss haven't suffered some of the pain that I have. Every one has a different tolerance to pain.

Laddylowe profile image
Laddylowe in reply to MarkMMays

We may be related that's my maiden name and sickle cell and the trait runs in my family

jo19 profile image
jo19 in reply to Laddylowe

I am sure that you guys can read clearly. The post claims SCA and SCT are the same. And I know that they are for a fact not the same thing. I have not claimed some people with SCT don't have pain and like most people who have SCD we have been surrounded by family members with SCT. Everything is getting educated but your responses are very defensive unnecessarily. SCT is a very common genotype and I have in no where cancelled out your experiences but the majority of SCT have a good quality of life. This site is the first place I even ever heard about SCT having pains. All my children and my friends children have SCT. I do not doubt your pain but again SCT and SCD are not the same I'm sorry. And like you said it's not a competition. One person's experience doesn't cancel someone else's. Even people who are not SCT or SCT have chronic pain. Someone in my clinic who lived as SCT for over 40 years was eventually diagnosed with SCD. That's her experience but please I repeat they are not the same.

Laddylowe profile image
Laddylowe in reply to jo19

Nobody said they are, but it seems like people just keep discrediting our symptoms as if it's all made up, every person is different and I believe in this saying that goes where it's smoke that means its a fire. If so many people are saying the same thing why do so many people have they opinion about what's not the same, and what they don't believe.. It's just a sensitive subject for a lot of us I do apologize for reading your response and being triggered,but I don't get how can people be so sure about what we FEEL over what they read or call themselves being educated about the differences and judge off of the next person experience, if we can die from it just like the people with the disease I think that says a lot...

seamsbydeb profile image
seamsbydeb in reply to jo19

SCT suffers, like myself, experience more pain as we get older. I suffer from pain in my legs, hands, arms, ab. When my legs are exposed to the cold...I wear leg warmers to help ease the pain. I too have been told the trait isn't my problem but I've been checked for all kinds of diseases relative to my symptoms over the pass 9 years and I have nothing except the trait. Ive had body scans also. So go figure. I know when I don't get proper rest I will end up with a pain crisis...not like a person with SCD but pain or shortness of breath, nevertheless. I take supplements, eat lots of leafy dark green veggies and drink plenty of water. Everyone knows their body, so we - all SCT carriers with pain, have to keep speaking up until we are heard. We will not be silenced and then only be heard upon a death related sickle cell trait crisis. We have to speak up now while we can and make things better for those who will come behind us. I have two sons with the trait and I'm doing it for them, too.

Luvnuallways profile image
Luvnuallways in reply to jo19

Did you read my post? For some cases it is exactly the same. Or worse. You cannot make a blanket statement based on the microcosm of your own family. Again they may hide their symptoms bc of the attitude you have. They may be diagnosed with 10 separate problems and told their symptoms are not related with SCT when in fact they are caused by the S. You are making a qualitative judgement without adequate proof, and it’s a kind of judgement that causes harm. Some of us with SCT have faced death more than once bc of attitudes like yours. The treatment is the same and the pain in the same. The possible complications are the same. So just like some people with SS only have crisis once or twice a year some with SCT do not have very intense symptoms but others do. Their symptoms are not tracked and are attributed to other problems. How can you decide whether 40% of sickles cells causes significantly less symptoms than 70%? Everyone’s body is different. If you know anything about genetics their is genotype and phenotype. So you cannot say in truth that they are not the same. Both have the S gene. And the level of expression may vary but the quality of the disease process is in fact the same. Go look up all the articles on the people dying suddenly. People who thought their shortness of breath was asthma and that they just needed to push through the joint pain. People who lost their spleen and have damage to their kidneys bc you and others keep up a myth that it’s not the same.

You may need to have more candid talks with your relatives and see if they have fatigue. Shortness of breath. Joint pain. Bone pain. If they alter or limit activities to avoid episodes of pain. You also need to evaluate the research.

Most of all let go of thinking you even have to make some distinction that you are worse off. At least you are recognized and can get care.....

jo19 profile image
jo19 in reply to Luvnuallways

You know what you are abs right. My family must be hiding so much from me because of MY attitude. You know them much better than I do. And trying to make myself worse off? I am worse off. You have faced death many times? I'm 40 this year and in my circle of other "worse off sickle cell patients, I have lost over 15 warrior friends in their 40s. I live in constant fear of not seeing my kids grow. My sister died of sickle cell, my elder sister with sickle cell is struggling. We couldn't manage to achieve our dreams because guess what? Acute crises comes anytime. Humiliates you in front of strangers, makes you helpless when it starts and to top it all you are in pain you can't believe your body can produce. I didn't learn anything from you or this site about what can happen to trait. I did that on my own years ago after my 3rd child who are all trait and I am so thankful for their lives and how they are thriving. How they don't require non stop hospital stays, not stop medication and injections, they can play, eat whatever, do everything I was denied as a child and not live in fear of the next crises attack. Now I am on 8 weekly exchange transfusion to reduce the intensity and amount of my pain. It gives me a semblance of life and I am still grateful. If you think it being recognised has made my life someway easier, I fear to think what my life would have been if it wasn't recognised and I am 100 percent sure I will not even be here. At least we can not live over the age of 7! I have educated myself long ago and sorry your problem is not with me but you are your problem. If someone told me they were in pain regardless of what genotype they have, they should be treated. I think you should go to a haematology ward, talk to the patients about their attitudes and come back and talk to me,because before even you started researching anything, that was my life. I thought about it not stop and wondered why I was so unlucky but like I said, I am thankful for even reaching a point where doctors, parents, sibling and old school mates thought I wouldn't. I would have given anything to be trait. I must have had such a bad attitude for so many people to hide what they were going through from me. Sorry for the long post but honestly if it's a competition about being worse off, I would love to lose.

Please do blood test to make sure she is ss. If not maybe muscle strain. If ss, use LOFNAC GEL to help pain.

it has nothing to do with the sickle cell trait.This is coming late,am pretty sure the leg pain is no more

Luvnuallways profile image
Luvnuallways in reply to onwa70


Please stop. You are causing more distress to people who are suffering just like you suffer. Acknowledging their suffering does not diminish your own. People who think like you are why patients with SCT cannot get proper care and athletes, for example, with SCT die from it unnecessarily.

There is now an increasingly large body of evidence confirming SCT can have the same symptoms as SCD, and the discomfort is on a spectrum just like SCD. Some with SCD hardly have crisis. Maybe only a few times in life. Others are very sick everyday.

Before doctors here in the US knew what SCD was, mothers seeking help would get accused of abusing their children and have their children taken away.

Why put your brothers and sisters with SCT through just as traumatic an experience by denying what they see their children experience, so much so that you contribute to the suffering by supporting the ignorance that prevents them from getting the proper diagnoses needed for proper care?

It’s insanity to deny SCT pain and crisis. Even the CDC website acknowledges that it occurs.

We need to stand together for a change in mentality. The belief that SCT is benign came from medical politics as a response to SCD and SCT being used to promote racist ideologies that blacks were inferior and stop is from doing things like flying or playing any sports on the grounds we might have trait and might have crisis. There was a famous black female flight attendant who was prevented from working in her profession despite training on the basis of her SCT status. Even though she had no symptoms and had flown without provoking her disease. This was in the 50s or 60s. So from there black doctors made a campaign to say trait is benign

They did not calculate the harm for the many people who now suffer from inadequate and improper medical care under the weight of this campaign

We have suffered enough. Times have changed we no longer need this archaic ‘protection’ of calling trait benign

We need the truth. With AS, you may not experience any significant symptoms but you may. And those symptoms can cause terrible suffering and even death. We need to re educate the public for prevention and treatment of the suffering and the medical community on correctly recognizing the crisis which is often a clinical constellation of symptoms.

By the time there is laboratory evidence, death is impending. Doctors need to treat pain with hydration and pain meds before it gets to the point of labs changing.

But please onwa70. Stop denying the truth. First do no harm.

Best comments ever, I'm so tired of being ignored and and look over like I'm lying and I'm a addict...

QueenZelda profile image
QueenZelda in reply to onwa70

Not true!

Does your daughter participate in any sports or in high altitudes often? If so yes it could be a crisis. I did a research paper on sickle cell trait & disease. I found that a lot of college football players & military personnel have died during physical activity & it was found that they had experienced crisis from having sickle cell trait not disease. One of them was actually from Florida & the mother sued the NCAA because the coach didn't take his symptoms seriously. There have been several other incidents like that case. A couple of NFL players have spoke out about having complications from the trait when practicing. Also, there was a study on all the ppl who were in the military who had a sudden collapse and died during basic training & if im not mistaken 75% had the sickle cell trait. So 2 years ago the NCAA made it mandatory for players to have blood testing done to determine whether or not they have the trait as a part of their physical & if they do they can still play but they have rules about how long they can practice etc. Feel free to Google sickle cell trait & exercise and you will see several studies that determine it to be true. Only problem I have is they don't tell ppl who aren't athletes or child/teen athletes or their parents about this. Some ppl participate in very strenuous physical activities but aren't athletes.

It's crazy that so many football movies reference how backwards they had it. Toughening one up by stressing their bodies past dehydration.... makes my blood fizz already. My advice is slow endurance. Right now I take walks an hour or two and am slowing incorporating running into it to condense the endurance into power

Yes. Your daughter's blood has trouble moving because it gets clumped randomly in different parts. If you can notice one body part being bright red like a random ear, you can tell that part of the body has poor circulation

Another piece of advice is to keep rubbing your body down like a Russian athlete after a good workout. Stretching and redistributing your own heat through your hands is one way to compensate for your blood's poor ability to deliver for you.

I also have the SCT and suffered from severe leg/foot and joint pains as a child till my late teens. Luckily my doctor believed me and sent me to a sickle cell clinic where I used to get treatment.

Mrstzjack1 profile image
Mrstzjack1 in reply to Gaalijay

And what treatment did they give you

Gaalijay profile image
Gaalijay in reply to Mrstzjack1

Sorry, I can’t recall the medicine, that was way,way back, I was living in Uganda, Africa then, more than 20 years ago, I can only remember my doctor’s name, Dr. Ndugwa, Mulago Hospital.

So do you have any issues now as an adult

On fact it sounds like her symptoms are classic for sickle cell. If you did not tell us she was trait and just described her experience anyone with knowledge would say that sounds like sickle cell. If it quacks like a duck....

Keep her hydrated, avoid sweets sugar etc. give her children’s Motrin or Tylenol for the pain

Try starting her on green herb. Green vibrancy is a good brand. You can mix it with water and organic honey.

Try getting her on Noni juice or Noni fruit pulp of you change that.

Avoid extremes of temperature, exertion, or altitudes. For example a brisk walk in 85 def weather can be enough to trigger crisis.

I’m sorry you are going through this. My son started displaying symptoms at age 8 also. He is 16 now. I feel so helpless because now he is sick and in pain most days which we could stop if we could get a doctors just to do hydration therapy at the out of symptoms

He is a fighter though. He almost died once after basketball and it was before I knew the seriousness of SCT crisis. He fainted at school. The EMS had to be called. Even though his blood pressure was extremely high on the top number and low on the Bottom number EMS said he was faking to get attention

He was an A student and an athlete as well as successful in many other activities. He didn’t need that type of attention

He couldn’t walk and kept falling when he would try to stand. He was in unbearable pain in his arms legs and chest. He was dizzy and short of breath. He has a terrible headache also. These bruises small round purple ones appeared near his wrists on both arms.

But it was only the unstable vitals that mattered to the doctors. And they couldn’t find anything else wrong except for SCT. So he was admitted to the Peds unit. Again with serious fluctuations of pressure. Terrible pain and couldn’t walk

Doctor said he was faking. When I asked how does he fake the extremely high heart rate and blood pressure that we are seeing. Which would happen after he finally fell asleep. The numbers would change then he would awaken crying quietly from the pain. I had trained him now to scream bc I knew they would say he was pretending to be in pain

He would look at me so we could breathe through the pain together so then the doctors only proof of him ‘faking’ again was oh he’s trying to get your attention. They only gave him minimal fluids and some occasional Tylenol so we were there for almost a week before his blood pressure and heart rate settled enough for us to go home.

with aggressive hydration and pain control he may have recovered in a matter of hours or. 1 day. So these myths that AS is benign cause great harm. Not to mention the huge bills I then had to pay. He missed school too which affected his grades.

He is a vivacious go getter and he fights as hard as he can against this disease. But we need help from the sickle community and the medical community

Parent of children with AS need to unite and demand a change.

With Love

I pray this helps you

I’m sorry the responses are so long after your post.

Staceyg I can say I understand what your daughter is feeling. I am 40 & I also get those pain in my leg & feet. They come & go but can last thur out the night at times. I mostly get them more at night than days. They can be very uncomfortable. I have the trait also. I been getting these for some time now. I want to go to the doctor about it but I never know it maybe a problem til I read yours & one other message. Now I know it maube a good idea to see my doc...thanx

Hi Stacey I completely agree that the sickle cell trait can be the cause of your daughter's problems. I am 31, and I have the trait. I have suffered with joint pains since the age of 13. As a younger child I never ever noticed it until later when I went to secondary school where sports was compulsory.

I played football everyday until one day my knees gave up. I started feeling severe pains in my knees. I had to stop soccer and switch to basket ball because I knew I had to use my hands more. Guess what.... my arms started hurting. My shoulders, my elbows my wrist. I was 15 by then.

However, being a lover of sports I just had to bear the pain. I continued playing basketball but I had to deal with the consequences after every game. I would barely walk, my knees were sore, I was tired etc.

I travelled to the UK after secondary school and whilst in the UK I developed chest pains as well. I noticed that I will feel severe pains in my chest each morning, especially when I slept in a squashed position.

I visited various doctors who said I was probably stressed and that can cause joint pains. I visited the rheumatologist who carried out some tests and said it was not rheumatoid arthritis, but the moment I told him I was very active while growing up, he concluded that I had osteoarthritis. Apparently osteo arthritis cannot be tested like rheumatoid arthritis, but can only be diagnosed based on symptoms. He also said I had costochondritis, reason why my chest hurts.

Recently, I visited my home country, Cameroon decided to go to the hospital. After explaining my symptoms, the first question he asked was if I had done a genotype test before, which I said no. He sent me to the lab to do various tests, and by the time I got my results, behold, I discovered that I am 'AS' meaning I am a carrier (or I have a trait).

He explained to me that recent studies have proven that carriers are more proned to have joint related pains. He advised me to drink loads of water and do exercises which are not too strenuous. He also prescribed some medications which were seized at the border on entry into UK as they did not recognise the medication. (How frustrating).

The fun is I cannot remember the name of the medication. But I will call my doctor to ask.

So yes I have been suffering all this while because I have the sickle cell trait, and as usual NHS doctors in the UK have been guessing rather than doing thorough examination. Or probably they just have not updated their knowledge on sickle cell.

As I sit here now writing this comment, my back is aching, my elbow leaning on the table is aching and I am very uncomfortable. I have never really had a crisis though. My son is 2 now and a carrier as well. Even though his GP has said it is not going to affect him in anyway, I am worried, as I know what I have experienced. I will start treatment for hima s soon as I have the means.

Yes she can feel pain from it,oddly to a lot of people's beliefs ..that's how the trait I have was discovered..not at birth but thru a crisis...people say what they think or read, hear about the disease but don't believe what we FEEL..just think about it...

Most definitely check to see what type of sickle cell trait, if she has more S than A then yes it explains a lot.

Yes it could. Keep her hydrated and don’t let her over do it with exercise or activity. Avoid extremes of heat or cold. Make sure she starts slow and works her way up with exercise or activity.

Has she had her vitamin D checked? Deficiency can cause bone pain and is common in darker skins. It is also easily treated.

Iknowmyownbody profile image
Iknowmyownbody in reply to

That's a possibility. My 9-yr old daughter has had bone pains for the last 6-9 months, and we've discovered it's a vit D deficiency.

That said, I have another daughter with the trait and she frequently has pains in her legs and is anaemic. No issues with vitamin D.

Speaking personally from my own experiences and what I remember my Mother going through, then yes, just the trait can create pain. I wish people in the medical community would give more effort and research to this because it is real. You can not have all these people complaining and everyone is your research. I am still trying to learn myself...

Hi, just to clarify , many other factors can be cause leg pains, you mentioned auto immunity problem, let’s be frank many AI can be passed through genes such as rheumatoid arteries,

Let put that into play, RA causes joints pains and arching feet. Speaking from the other side I have full SS and my brothers and parents are all AS none have any factors of crises- I have never met anyone with As in crises, underlining factors such as other health problems contribute to those pains.

Please take her to the doctors and get her tested for AI such a chemistry test .

I hope this put your mind at ease , and if you are (or she drinking) frizzy drinks please stop drinking frizzy such as coke as the the ingredient are also the main attribute for legs pains and headaches

Let me know how it went


seamsbydeb profile image
seamsbydeb in reply to mmjegs12

You are meeting a lot of people right here with the SCT who have pain and you just refuse to believe it. If we carry something in our body that under certain circumstances can cause us to have a major pain crisis which can lead to can you say under normal circumstances they experience no problems? It is just crazy to me that the experts can not rationalize that we have underlying symptoms all our lives but they try to attribute them to something else, as in my case. I've been tested for everything under the sun and I only have the SCT. Right now I'm experiencing pain in my abs, arms and hands. It affects my quality of life and I'm resting on weekends just to work the next week. If I don't I'll have a pain crisis and have to miss work because I get completely exhausted to the point I can't stay awake. For me rest helps a lot but who wants to spend their free time in bed? Yes, SCD is way worse than SCT but trait carriers suffer too!

So true. It's been times when I was hospitalized in the past and had roommates with the sickle trait and they were experiencing pain as bad as me and I have sickle cell disease SS... so what you are saying IS VALID FACTS! Not one person experience will be the same. We can share our stories and respect each other's experiences with this disease.

Peace and blessings!


My daughter also has the trait and she has knee pain that started around the age of 6. I think it is due to sickle cell trait. On days when she is super active and playing rough she always end up having pain in her knees. Everyone is different and their body responds differently to sickle trait so no one answer will fit your child. If the pain becomes unbearable for her then seek out a hematologist for her. In the mean time give her ibuprofen and let her put heating pad on her pain and soak in hot water as long as she can bear it. Hope this helps. Peace and blessings!

I have suffered bad leg pains since I was little. I also have dizzy spells, breathing issues, and abdominal issues. I have ST, and my doctor told me that people with the trait do have symptoms sometimes as well.

More than likely get her tested to see what each hemoglobin level is how elevated each one is. Seriously that's how they found mine. I'm Hemoglobin S Dominant

Have your daughter checked by her doctor. It may or not be related, but you won't know unless she is examined. My son underwent quite a bit of blood work to check for inflammation and autoimmunity issues, and those were ruled out before the trait was identified as the true cause.

Q What I’m reading some people w/SCT are experiencing is what brought me to this page. At about 8 years old I had a painful episode that left me unable to walk for about a week. Tests were conducted but doctors could not find a reason for my symptoms. Fast forward into adulthood I’ve had episodes of extreme fatigue, body pains and walking difficulties that disappeared just as suddenly as they appeared. Walking difficulties & joint pain so severe that I needed a can for a couple of weeks. Since February of 2019 until now July 2019 I’ve been dealing with severe joint pain & walking difficulties diagnosis unknown. I have always been anemic, low vitamin D and have to pay special attention that I don’t get dehydrated. I’ve had to get blood transfusions and or iron infusions for the anemia & I’ve taken prescription it D for some time. I say all this to say That always felt my “episodes’ were related to SCT because there was never a valid medical explanation for what I’ve experience. It’s interesting to see that I’m not the only one this is happening to. If this disease didn’t primarily affect people of color more research or a cure would have been identified. IJS

You may want to get checked for alpha thalassemia trait as well. I have sickle cell beta thalassemia. I got SCT from 1 parent and beta thalassemia trait from the other. People that have SCT and no other blood disorders generally do not have issues. SCT with other blood disorders have a wide range of possible complications. I have pain crisis periodically because sickle trait and beta thalassemia trait couple together are a form of the disease. Not a lot of literature about sickle trait and alpha thalassemia trait but theoretically it may be causing your issues, especially the anemia.

I have the trait as well and it may be the sickle cell because i do experience the same exact thing and recently read about others having this same pain as well ......the doctors haven't updated no info on sickle cell since 2015 so they can't say that the sickle treat doesn't effect should loom into a doctor that deals with sickle cell. Hope she gets answers and overcome this.

yes, because Growing up with sickle cell trait I had leg cramps and when I got older I start to get spasms in my stomach if I didn't eat right. Now that I'm in my forties I know to eat proper vegetables fruits proteins that I need And I Exercise to keep my body Strong.

My partner has the trait and he gets lots of a nurse of many years I have treated people suffering the same also not pain related he was told and we had read that sickle cell would not affect his eyes but he has now been diagnosed with sickle cell retinopathy in both eyes and almost lost his sight in one eye before his amazing eye surgery !!

I only carry the trait as well & have pain in my back, my legs, & feet so bad at times it hurt to walk on them especially when I get up in the morning. 😥 this has been off & on pain since I was a kid. Some people may experience pain but, it's nothing like someone with the full blown disease which my younger sister has & have had it rough. 😥😥

Hi 😊 Thankyou for posting & bringing this to attention..My 12 year old son has Sickle-cell Trait, bless him he has had terrible trouble with leg/knee pains over the last 3 years, has been diagnosed with osgood-schlatter & sinding-larsen-johansson disease (basically joints & tendon issues in legs/knees) also sometimes after suddenly exerting himself in exercise ie..sudden bouts of running whilst playing basketball, he suddenly gets raging hot & clammy & breathless? (this is really worrying) & has to stop to get his breath & drink lots of fluid! He also suffers alot with stomach pains? Has done for years & fatigue?

After reading your post & some of the replys,I'm now wondering if these symptoms my son suffers with, are they linked to having Sickle-cell Trait? The only ever time I've had any insight to Sickle-cell trait, was when my son was born, we were called into a room, told that my son has the Trait & basically just left to "read this leaflet" (that didn't contain much info) & that the only time we need to mention it, is before an operation? or if he is to go on a long haul flight? Or become a deep sea diver!

I have the trait, and I also have issues with aching legs (muscle aches). There is research that shows some individuals with the trait also experience some pain episodes. This has been happening to me for years, and other than that, I am extremely there is a possibility that is why your child is experiencing that with her legs.

My son 3yo has had intense pain Crisis in legs for the past 4-5wk. He was diagnosed with SCT yesterday. Im in shock, crying and googling.

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