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Sickle Cell Society
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Sickle cell trait but leg pains

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?

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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?

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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.

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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.

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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: ncbi.nlm.nih.gov/pmc/articl... 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.

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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.

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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.

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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

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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.

Dr.V

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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

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

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

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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.

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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.

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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

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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

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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.

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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.

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And what treatment did they give you

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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.

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So do you have any issues now as an adult

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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.

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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

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