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Sickle Cell Society
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Sickle Cell Trait is a disease.

This site needs to remove the statements about Sickle Cell Trait because it is wrong. If you have the Trait you will have pain in your body. I have the Trait and also have 4 children with the Trait . I am also published in this area of Sickle Cell disease. If you have the Trait you can go blind. Three of my mother's siblings lost their site. The life expectancy of a person with the Trait is 64 years old. My one son almost became sterile because of a pain crisis. I have had many pain crises as well as my children and grand children , aunts and uncles. Most days the body can feels like your trying to walk in water. Taking supplements like fish oil in high doses can help your blood. I have seen what alcohol can do to the kidneys of a person who has the Trait. My children are all Caucasian and when I have taken them to the hospital the doctors will tell me I am a liar about the Trait when they have been in a pain crisis. I have traced the genealogy of Sickle Cell. One must take a certain kind of blood test to find out if they have the Trait. The Sickle Cell if exposed to oxygen in the air it will destroy that cell. The more you keep your body hydrated and eat healthy the better. You hear stories all the time if people with the Trait who die and then they say the person had the Trait and it turned into the disease. The Trait is a disease. Let's understand that and take care of our bodies knowing we might have issues if we do not take care of ourselves.

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I have had pain crisis for years, but in the the last few years they said it's a in my head. until I started doing my own reasearch. I do have the trait. I was told that doesn't count. So I have been told I Have Fibromyalgia.

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I have sickle cell trait too and I also have been diagnosed with fibromyalgia. I have had pain from sickle cell trait. My oxygen level was low and my hemoglobin was very low, doctors lied to me and told me it was all in my head,they saw the low levels and they saw me needed to be put on oxygen but they tried to blame it on everything else. I knew what was happening to me and I knew I was sickling. I thank God I am okay today. What I would say is to know your body and don't back down when doctors try to tell you aren't sickling because you have the trait be Kind but be Assertive. God be with you.

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I Have Sickle cell disease and Fibromyalgia They Are 2 Different Pains... Both Very Painful but Different. 1 consist of Mainly Joint Pain Causing Crisis.The Other is Pain Symptoms in the Muscle Tissue n Nervous System Causing Pins/Needles a Burning Sensation in Both Hands n Feet, Groin Pain,Chest Pain, Migrains, Insomnia, Hypersensitive to Light n Sound,Blur Vision the List Goes On

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Thats what i have been going through. I had a stroke at 6 and seizures. Doctor wanted to send me to a shrink, thought it was all in my head. I have having crisis for so long,but i never knew thsts what it was. My sickle test just came back positive. Now im being listened to. Its been quite a nightmare but God heard my cry and im finally going to get the treatment and the right support. God is good.

Keep the faith!

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It is a disease and doctors need to get it in their head. Most people don’t complain about their issues or they have lived with it their whole lives and think how they feel is natural. Keep beliving believing.

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Im at the hospital right now, just got in. In so much pain, my blood work kidney disfunction and LKC positive. Im having pain shoot down my leg and my left pinky is going numb. I havent been able to keep in fluids for two days, im very weak and frustrated but relieved that the doctors can no longer ignore me and have no choice but to do something so for that i am thankful to God.

Keeping the faith!!

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Sorry you experienced so much problems but I am glad you have received help with your health because the problems you mentioned are very serious. How is your kidney function now if don't mind me asking?

Allah God bless you

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what is your age? and Do you have a disease or trait ??

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The problem is not everyone with trait is ill or sick. A lot of people have trait and have absolutely no issues unless they go into extreme conditions e.g. a depressurise air cabin.

The trait suffers in my own family have no issues but then those with SCD have so called "mild" sickle cell disease. In fact if it wasn't for having blood tests for other things e.g.having operations, blood donation or having a child with SCD we wouldn't know we have trait.

However I do agree with you the advice given by the Sickle Cell Society is wrong. A website that UK doctors commonly use has now corrected itself to state those with Sickle Cell Trait may have pain issues. Unfortunately the main NHS website still posts incorrect information on Sickle Cell Trait plus many other diseases for that matter. Societies like this one follow the standard poor information given by that site.

Anyway one thing I've learnt is it you are going to challenge the people who write these site's about their inaccurate information you need to use professional language as well as asking them where they get their information from. Even then they don't correct the information.

Finally when a doctor calls you a liar about trait call them out on their ignorance very loudly but politely. Ask them if they studied genetics at medical school then point out humans are one biological race and while your phenotype may look "white" it doesn't indicate what your genotype is.

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So true about the phenotype and genotype. When I was in nursing school my professor made mention of a racist Caucasian man whose child(also Caucasian) was in pain. After an electrofluoresis was done, the patient was found to have sickle cell disease.

I also have the trait and as an RN, I had always been on the side that I would not be affected, but now that I’m older and having “unexplainable “ pain, and living in a high altitude and seeing the pain change like night and day depending on the weather, I’m thinking the powers that be need to do a little more research and change the textbook. My daughter who has the disease said the pain I describe sounds like what she goes through.

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Hello Omie. Bluebug's already said most of what we were going to say, but just two more things...

In our post, we mention specific genetic variants of the trait called Oman and Antilles. Have you been tested for these? They require a special specific blood test, which you will only get on request. Given that symptoms seem to run in your family, it's possible you have one of these variants of the trait. It's also possible that you and your family may have a sickle cell disease. Even if your genotype is not SS, if it is, for example SC, SD, S beta thalassaemia, there will be a sickle cell disorder. Make sure you and your family are tested for all of these possible haemoglobin disorders!

As for your doctor, unfortunately this is very common with sickle cell issues: it often isn't recognised in Caucasian people, especially in countries which do not have newborn screening programmes. In the UK, we have exact numbers, so can say that in the last ten years, over 1000 white babies were born with sickle cell trait. Tell your doctors that, and make sure they're aware!

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My family is from Mexico and father German decent. I had three marriages. The first two children were tested and they did not have the trait. The next set of girls 4 two had the trail and two did not. The last two boys both had the trait. There is a researcher who feels the more Caucasian the more issues the person will have. I know as a mother just by the screaming of each child in the night from the horrible pain they would experience in their arms and legs. My last two boys have become message therapists and truly are healers with their hands, they understand pain. I have what is called Sickle Cell AS. Everyone in my family has passed away. My grandmother has 12 children. My grandfather died at 64 as well as my mother who died of a blood clot in the brain. I did my Masters in Clinical Mental Health in using ACT therapy with those who have Sickle Cell Disease to help handle the pain. My daughter is a nurse and all three of her children have the trait. When I stay at her home in the night you will find me rubbing arms and legs as soon as the children try to sleep. They have all been tested as well. I am turning 64 this year and have worked closely with others who have the trait and have gone thought the gammit of pain killers. I do not go a day without pain. In the publications I have done I want the medical field to understand that this is a disease not as horrible as the anemia although I suffered with anemia my whole like as well I do feel that having these sickle shaped cells have caused many people distress, not feeling well, hard time sleeping and just not feeling well. There are other symptoms as well that I have not touched on.

Thanks for you kindness and understanding.

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It’s frustrating that SCT symptoms go unrecognized in the face of so much evidence. I don’t think you can say the pain is worse for Caucasian’s with it. There is no evidence to support that. It is however proven that physicians have prejudiced bias that pain in blacks is not as severe and they are just wanting drugs to get high and that pain is more believed when it occurs for any reason is whites. Hence if sickle cell and trait were a ‘disease ‘ common among whites there would be a completely different response. What you are experiencing is the medicalisation of prejudice because no one believes trait Causes similar severe pain as disease because it mostly ( not only ) but mostly affects blacks so the pain is not believed. Since pain can’t be objectively measured it can’t be proven.

So despite medical evidence showing the Trait can make you sick in similar ways as disease the greater community continues to deny it. And the societies don’t want to admit it either bc 1. Resources are already limited for SCD in part bc it is perceived as a ‘black disease’. So they don’t want to have to share those resources with the millions who are heterozygotes. And 2. They fear more discrimination against blacks becoming athletes , being in the military, flying in planes etc. which did happen in the past as a result of trait and disease being classified together. It is sad that the socioracial politics of our country interferes with truth and with relieving the unspeakable suffering of so many such as you who suffer greatly from this so called ‘benign carrier state’

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Thank you for this information I. I have the SC trait and have been feeling generally unwell. I am constantly tired and my iron level ate low and also low on vitamin D. What would you recommend me to do to manage this ?

Do I need transfusion?

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Hi,we live in Australia, my 13 yr old son is white Caucasian, having both parents being also Caucasian. As far as I am aware we have 4,no less,generations of Australian heritage.we found out last year my son has sickle cell trait plus co existant alpha thallaseamia. Which so far has been diagnosed in the " mild" range.no knowledge of his condition prior.it def seems to have symptoms of scd.and seems to be very uncommon in caucasions also being a complex disorder with many questions and many unanswered ones.I am seeking as much info from the health system and peoples personal stories. Thankyou all for sharing.

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I thought that your post about removing a statement about sickle cell? What statement(s)? What make sickle cell trait which is hereditary a disease? That stigma is what should be removed!

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Removing the term that Sickle Cell Trait is not a disease. It is a disease.

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How and why?

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I agree with you omie11 Sickle cell trait is a disease. It should be given a different name like blood disorder or something because sickle cell trait does and can cause pain to people. I have had chest pain and low oxygen levels and I am still having problems with oxygen levels today one minute it's up and one minute oxygen is down. God bless

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What the OP wants removed is statements that those who have Sickle Cell Trait are completely symptomless. Some websites still state this, when in fact some people with Sickle Cell Trait can have symptoms like those with Sickle Cell Anaemia.

I also don't understand why you think there is some stigma when the trait is a genetic variation which is suppose to help protect you from dying from Malaria.

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I know and understand that is genetic variations. The stigma is why this genetic mutilation called a disease. I do not see it as a disease as it is not transferable or contagious.

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I don't tend to call illnesses diseases but some people do whether the illness is due to genes or not. It is just a case of how you use terminology and it is not worth getting hung up on.

The main thing is for ALL the medical profession to recognise illnesses that aren't in their medical books because they are commonly associated with non-Europeans and not to dismiss them when they do turn up in "white" people.

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The problem is those who are white have more issues with the trait.

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How do you know this?

Most people with trait actually don't know they have it regardless of their skin colour. It's only in the last couple decades have they started mass screening infants at birth in the UK.

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Because I did the research and spoke interveiwing many researchers in the field here, the Uk and in Africa.

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If you did the research then you should be happy to link to publications, as in doing so you would help the Sickle Cell Society spread more updated information.

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Sam Goldstein & Jack A. Naglieri (eds.), Encyclopedia of Child Behavior and Development, DOI 10.1007/978-0-387-79061-9, # Springer Science+Business Media LLC 2010

Cross Culture

Cross Culture Bereavements

Culture Development

Howard Gardner

Alfred Adler

Apnea

Wisdom

White Matter

Empathy

Bedwetting

Psychology

Symbolic Thought

Baby Talk

Sickle Cell

Sickle Trait

Birth Order

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These are my publications.

I have a Masters in Clinical Mental Health, MFA, and Phd.

My masters thesis is published as well Sickle Cell Disease and the us of ACT Therapy

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This means that bias is ingrained in you also. Step outside yourself and think hard about how you could possibly come to the conclusion that a disease that primarily affects blacks somehow affects whites worse. What measures are you using to determine ‘worse’ or ‘more severe’. It does not even make statistical sense. Your degree is in mental health. That kind of research is notorious for its bias and racism. Please stop because you are further hurting people who are already suffering the unspeakable without any relief. And you are focused on research that will make it easier for whites with trait to get help the the majority of those who are suffering. It’s adding insult to injury

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ʏᴏᴜ ʜᴀᴠᴇ ᴘᴏssɪʙʟʏ ᴅᴏɴᴇ ʏᴏᴜʀ ʀᴇsᴇᴀʀᴄʜ ɪᴛ ᴀғғᴇᴄᴛ s ᴀғʀɪᴄᴀɴ ᴀᴍᴇʀɪᴄᴀɴs ᴍᴏʀᴇ ᴏᴛʜᴇʀ ʀᴀᴄᴇs ᴄᴀɴ ʜᴀᴠᴇ ɪᴛ ᴀs ᴡᴇʟʟ ᴀɴᴅ ᴡʜᴇʀᴇ ᴏɴ ᴇᴀʀᴛʜ ᴀʀᴇ ᴜ ʀᴇsᴇᴀʀᴄʜɪɴɢ ʙᴇᴄᴀᴜsᴇ ᴍᴏsᴛ ᴘᴇᴏᴘʟᴇ ɪɴ ᴛʜᴇ ᴜs ɢᴇᴛ ᴛᴇsᴛᴇᴅ ғᴏʀ sɪᴄᴋʟᴇ ᴄᴇʟʟ ᴀᴛ ʙɪʀᴛʜ sᴏ ɪ'ᴍ ɴᴏᴛ ᴜɴᴅᴇʀsᴛᴀɴᴅɪɴɢ ᴡʜʏ sᴏ ᴍᴀɴʏ ᴘᴇᴏᴘʟᴇ ᴏɴ ᴛʜɪs ᴛʜʀᴇᴀᴅ ᴀʀᴇ ғɪɴᴅɪɴɢ ᴏᴜᴛ ʟᴀᴛᴇʀ ᴏɴ ɪɴ ʟɪғᴇ ɪ ᴡᴀs ᴛᴇsᴛᴇᴅ ᴀᴛ ʙɪʀᴛʜ ᴀɴᴅ sᴏ ᴡᴇʀᴇ ʙᴏᴛʜ ᴍʏ ᴄʜɪʟᴅʀᴇɴ ᴀɴᴅ ᴍʏ sɪʙʟɪɴɢs ɪ ᴜ ɴᴇᴇᴅ ᴛᴏ ᴅᴏ sᴏᴍᴇ ᴍᴏʀᴇ ʀᴇsᴇᴀʀᴄʜ

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Some people may find out late if they're not raised by their biological parents. I was raised by my paternal grandmother and did not find out I had the trait until I was 22 and pregnant with my first child. I only found out then because my niece was born during my pregnancy and with SCT. At that point we (my brother and I) contacted our maternal grandmother who confirmed that we both have SCT from our mother. This then explains why I suffered with some pain and breathing issues during my high school track and field days since I had no clue... It's a miracle I survived without great incident. But also now I am believed to have asthma and costachondritis which sound more like complications from SCT at this point.

My iron is low and I struggle with my breathing in extreme heat and after flights, especially when I travel to certain areas (high altitude). I must find the proper physician to ensure I live a longer, healthier life.

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Those researchers are biased. Bc most of the actual literature shows blacks suffering the most but it’s ignored. Most of the cases are blacks. Pain cannot be objectively measured and micro organ damage is hard to detect so those researchers just believe he whites who complain more than the believe the blacks. It’s medical racism at its finest. Most of all it’s besides the point unless your goal is to have white privilege extend into SCT. We are all suffering race is irrelevant. Race is a made up construct anyway. What matters is if you have SCT or not. Simple

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This is fallacy that those who are white have more problem with trait. Their problems are more noticed bc it’s even more unexpected and because studies have proven that when whites complain of pain for any reason doctors believe them far more than they believe blacks who complain of similar levels and causes of pain. We can’t make matters worse by contributing to this prejudicial lie. We all have to stand together to have trait addressed equally and correctly. Pain is pain. You cannot say that being white somehow makes the pain worse. It’s upsetting and actually insulting

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We have a condition/disease whether or not we are symptomatic. An asthmatic is an asthmatic even when they are not having an asthma attack. They have the potential if exposed to the a trigger. Some people who have SCD sickle cell disease never have more than the mildest of symptoms but they are treated with protocols that keep them safe. Likewise SCT sickle cell trait patients (especially those who have experienced severe symptoms) deserve to be treated with respect and to have the necessary precautions taken by the medical and athletic communities. For example, being chilled, exposure to high temperatures, becoming dehydrated and some (not all) colds or flu increase my risk of a sickling crisis. Why should I not be protected and treated with respect? Statement that the SCT is not a disease have left me rejected by an ER in extreme pain. I respond quickly to IV hydration, if they move fast. However, because they are misinformed about SCT they leave me in the waiting room until the pain is so excruciatingly pain I can think of nothing else but living past the next moment. It just seems mean to me that so many people are heartless.

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I appreciate your comments,I do see that the ones with SCT would feel bothered with the lack of research and medical documentation, that not yet proves the many other complications and symptoms . with SCT being so complex ,I as a mother of a child with sct sympathize with you all.until my son was diagnosed I had never heard of the condition, nor has anyone in our family,and I still feel that even my Family Dont realise and see this condition can be a serious health problem,which is absolutely frustrating.I pray for more scientific studies,and definitely more support for families

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How about alcoholism it is a disease.

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Acquired period. Self inflicted.

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Sickle Cell Anemia ie SS is called Sickle Cell DISEASE. It is also inherited. But no one disagrees about it being a disease because whether a disease is communicable acquired or inherited , if it makes Ppl sick especially chronically sick it’s a disease. Trait does all the same things that SCD does. And there is a rainbow of severity in it. Just like SCD. So yes it’s a disease.

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That is a false concept. You can get Malaria.

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Where did I state you couldn't?

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Deemua we cannot be so worried about a stigma that we keep allowing false statements to put our health, well being and very lives in danger. Sickle cell trait is hereditary and it is a disease. Almost half your red cells will have DNA deletions that allow them to sickle, make them stickier so that they do not flow properly through your vessels, and make them not carry the oxygen and deliver to cells as well as they should. This all creates symptoms of organ micro -damage that is missed and hence untreated , causing the same symptoms as SCD, pain , debilitation, crisis and even death. People who suffer and do not know TRAIT is the cause are labeled anyway. As lazy or not trying hard enough and they push themselves and die as a result. Or lose military jobs etc. if it was properly addressed we would be protected from such discrimination by ADA (disability act) laws. We would have legitimate access to more resources. Most of all we could keep our children from dying for no reason on the football field or the basketball court

We must stop this insanity of ignoring a disease Nc we are so worried what white ppl will think of us. It’s crazy

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I wonder if the problem is that the percentage of those with the trait who have symptoms like that of SCD is very small so it's easy to ignore. I have three children with the trait just like most people with sickle cell. None of them have any issues like most sickle carriers I know. But I have educated myself about sickle cell carriers and there is a chance especially if put through rigorous exercises to have symptoms mainly due to reduced oxygen levels. My children are stronger than I am but I know when they are exhausted. I have also advised the school that they can get very tired. Like other sickle cell mothers I pray they never have any of the experiences I have with my health. There are variations of SCD and sickle cell traits. As more research is done I know people will be given definite answers.

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One thing you need to advise the school on and every school they go to, is that if your child is thirsty they must be allowed to drink water. No ifs and no buts as some schools try and regulate the amount of water children drink.

The odd thing that was noticed about me by some of my friends' who I do exercise with is that I sometimes am much more thirsty than them. It actually concerned one of my friends' enough until I pointed out that I know why and he wasn't to worry.

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Me too. I used to be an avid volleyball player. I would drink large amounts of water. I would tell people I am a plant. If I start to wilt just water me; and I will spring back to life. :) I joke, but water combined with a short break could be the difference between life and death, even when exercise is NOT at the extremes of human endurance.

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I live in w.a Australia, and we are Caucasian, my son 13 has SCT plus alpha thallaseamia trait.I feel so frustrated and alone with knowing his condition is serious and has symptoms that should not be ignored,but as this is absolutely rare/uncommon in Caucasian ions I know that people Dont believe that my son can have genuine reasons,for being unwell,or tired,or lethargic or just moody,but people see it as just his personality' or other reasons or even excuses as to why he's not " normal".I do need note support but do not know where to get it.

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Yes thankyou for your comment

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More information and facts about sickle cell trait, anemia and disease are being educated wrongly. I have information that I will post about sickle cell trait in the future. So many misconceptions that we don't know what to belief

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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...]

This is not perception. This is science. If half your genes produce sickle cells then it’s likely you will sickle. And then get sick from it in some way

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Yes,indeed that makes sense.

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In fact anybody who is confused about sickle cell disease and trait..... read sickle cell. Md...the resource to the Sickle Cell Disease patient

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Your research and site are giving antequated and misleading information designed to protect us from discrimination while leaving us open to die when knowledge and prevention could be the difference between life and death. Have you checked out the recent findings that show the red blood cells of people with trait is stiffer and stickier? Have you followed the death of our young and the loss of organs such as the spleen in those with trait bc they were lied to and told it was not a disease. We are playing Russian roulette with our health and our lives simply bc we fear labels and stigma from the mainstream. ADA laws now protect anyone with a disability like SCD or SCT. As long as we are honest that it is a disability. We are in a far worse position when we keep getting sick for no apparent reason bc SCT symptoms are denied, and we lose jobs, military positions that would instead have to accommodate us with a less strenuous position for example, all bc of politics. I understand how it was used to stop us from flying or working for the airlines etc. but in this era we have more tools to prevent such discrimination. Either way ignoring the obvious suffering of so many, who could be helped by something so simple as IV fluids , is ludicrous and actually cruel. Please re evaluate your position if you can be open and objective about it

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Very informative, my daughter has the trait recently she has been telling me her bones hurt. I am going to take her and get some lab work done. I will also need to get lab work done to see if I have the trait. I wonder if they test Italian women for this when pregnant ?

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FACTS FOR CONSIDERATION: 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...]

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Thank you

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I'm currently being referred to an ME specialist for further testing for symptoms that are very Sickle like and I too have Sickle Cell trait and both daughters have full blown sickle cell, thought at times I feel I have more sickle pain than they do bizarrely. If not ME they may explore fibromyalgia. This is an insightful discussion and glad I'm not the only one. I thought I was going mad or slowly dying. Take care all

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Well don't give hope you are not alone.

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Yesssss thank you people with the trait die all the time and experience of pain shortness of breath etc. This comment is spot on as I have done research too please everyone take care of yourselves. Smoking and drinking does not help.

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Sickle cell Trait Can Not Turn into Sickle cell disease... It Takes 2 Traits to Produce Sickle cell disease. You Can Have Trait n None of Your Children get Sickle But if You Have Sickle cell disease Your Child Guarantee to be a Carrier

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Sickle Cell Trait is a disease. Sickle Cell Anemia is also a disease. They are different types but both a disease.

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Yes I agree with you Omie11 both sickle cell anemia and sickle trait are disease, different forms of disease but are in fact diseases, any thing that causes sudden death or blood transfusions is a disease making sickle trait an disease because it causes such things.

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True as all my siblings have the trait buy none suffer from it and live normal life. But unfortunately for me I met my first partner who have full sicklecell desease and we had a baby together and she had full sickle cell .He died at age 31 And she died at age 25. So although I don't get any crisis I have the pain of losing my child .

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I agree,if we can die from it then how can we feel pain

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I have the trait and have no pain at all. And my parent is in thiere 70s and no sickle-cell problems .So not every one with the trait suffer from it.

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You are very lucky you have no pain at all.

However, only speak for yourself and not for everyone.

I have the trait but have been in pains consistently for the past 8 years, it’s no joke. Honestly I think I’m dying slowly.

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Years ago I was told I had Sickle Trait C. I think I was fifteen. During my pregnancy was fine, after childbearing years things started to decline. I suffer with bone and upper thigh pain and I can’t get my physican to understand it’s it in my head. When I fly I literally feel like I’m gonna pass out. I get ready weak and tired for no apparent reason and the doctor say it’s my weight. I’m not that freaking heavy. I really wish medical providers study the effects of SCT.

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Oh and my eye sight is horrible now..

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