Why can't anyone accept that trait can have symptoms nd even crisis???Why do you let us suffer? Why must we die before anyone believes us?

There are tons of case reports of people with trait suffering the effects of crisis discovered post mortem to be sickle bc of the sickle bodies found in the area of pathology. Isn't it I humane to refuse treatment before the patient has deteriorated so much that death is inevitable? if sickle trait can cause death then why can't it cause pain and suffering short of death? Please look into this. People are suffering.

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  • I meant INHUMANE

  • HI I am a Sickle Trait. I know what you men by the ignorance about the pain and crisis we do have however I do carry a Card which which says Trait but has letters after it which in theory should tell medical staff how Symptomatic I am. I moved out of London and my new GP did not have a clue what it meant or ever seen one before. I did have a crises in Bedfordshire and got the worse treatment ever and the staff had no clue how to manage my Pain at all. I was not able to renew my Sickle Cell card in Bedfordshire as they did not have a clue but did send my blood results to my GP so he knew how much Sickle I am. I have since moved back to London for better care. I agree this is inhumane I never suffered so much in my life. I was so badly cared for which meant i had to spend more time in hospital and was not given any Morphine till right at the end

  • Thank you ladydee!!! I cried when I read this. I go thru the same. I just stay home and suffer until I think I am dying if my doctors office is closed. I try to predict in advance so I can get fluids before the pain is unbearable. And so I can get in time for my doctor. I don't understand what they have to lose by realizing this problem. Except to save ppl from horror.

  • I will ask my heme dr for a letter. Like you I am scared to move away from where I live. Cause it means starting the suffering over again. And maybe no end in sight.

  • Aww Luvnallways. I also feel your pain. Do you hold a card? If not suggest you look into this as It is always a help when you are not able to correspond to the medic's.

  • Thanks for posting your experience ladydee. I also have sickle cell trait and I'm suffering from a lot of unexplained pains. such as, pins & needles, pains on my knees and ankle joints and motion sickness. I have reported these to my GP several times, but all I ever get is over the counter pain killers and the last time I went I was told to have blood test done; which shows that I'm now anaemic. so I have been prescribed a 3 months course of iron tablets, but the pains are still there.

    how can I obtain the Card you mentioned? I live in north London. Please any information would be appreciated. many thanks .

  • Aww Luvnallways. I also feel your pain. Do you hold a card? If not suggest you look into this as It is always a help when you are not able to correspond to the medic's

  • Yes I am going to find out. I live in the states. So we will see

  • I have trait as well and i used to get some of the symptoms but i never realized it was that until recently after an x'ray for this continuos pain in both my legs that i was asked whether i have sickle cell disease, when i said no but i have the trait i was told the reason for my terrible pain was a condition found only in patients with sickle cell disease.It's called avascular necrosis, it affects the upper bone of the hip, and only those with sickle cell disease get it, so u are right, attention should be given to those with the traits as well.

  • What are they going to do for you? I wonder if you would have gotten fluid when you had symptoms if this necrosis could have been avoided.

  • Thank you for sharing this! That's awful!! I am so sorry that happened to you. See I am wondering if u felt symptoms and got fluids before it got to that point would it have made a difference. That's y we need to speak up and make the medical community pay attention.

  • Thanks for your comments, yes we do need to get the attention of the medical community. I do not know whether fluids could have helped, the doctors in my case don't know much about sickle cell disease or the trait so they could not say anything about it. I am yet to speak to a specialist nurse in our area about this. I have a daughter and some nieces and nephews with the disease, but i had no idea those with traits too were vulnerable to the symptoms. I will keep you informed about any developments, thanks again.

  • If u get symptoms IV fluids make difference bc they help to thin out the blood and dilate the vessels which helps decrease the clotting effects of the sickling cells. So if u feel the pain try to get them to give you fluids. If you are in the US you should report your case to the sickle cell society. Were you doing anything unusual ? Like a lot of physical activity? Were you dehydrated? On a daily basis you have to drink plenty of water. Take a vitamin with folate. I also take Noni Juice but of all the brands Only Natural Inc is the only one that has a super high concentration of the active ingredient. I also take a green juice herb. I use green vibrance but I don't think it matters which one u use. The green herb helps increase the red cells somehow. I see a difference in my symptoms. Also the amount of available oxygen around you matters. So I keep the air conditioning down at 70 or 69 bc I live in a very hot climate. Also u have avoid mountains or airplanes I found this link below after my original post. It gives a lot of information about what happens to us. There are a few doctors who know. I guess we have to be the ones to show the others.

    signup4.net/Upload/ALTA10A/...

  • Thanks for the info, someone told me about this Noni juice some time back, i'm yet to try. I will keep you informed about any new developments. Thanks again. God bless.

  • There have been studies done that confirm complications associated with Sickle Cell Trait. This was looked into when several black soldiers dropped dead during basic training in the US. There is also a condition called S Antilles that was discovered in France. In addition it was discovered that cells of Trait carriers sickle and revert depending on the amount of oxygen available. Finding cells in the sickled state is reportedly tricky but had been done.

    I guess the medical community doesn't want to admit to it because either they are ignorant or they don't want to deal with mass hysteria- There are at least four times as many people with the trait than with the disease.

    conditions related to Sickle Cell Trait include:

    A summary of the risks associated with sickle cell trait is as follows.

    Splenic infarction at high altitude, with exercise, or with hypoxemia

    Isothenuria with loss of maximal renal concentrating ability

    Hematuria secondary to renal papillary necrosis

    Fatal exertional heat illness with exercise

    Sudden idiopathic death with exercise

    Glaucoma or recurrent hyphema following a first episode of hyphema

    Bacteruria in women

    Bacteruria or pyelonephritis associated with pregnancy

    Renal medullary carcinoma in young people (ages 11 to 39 years)

    Early onset of end stage renal disease from autosomal dominant polycystic kidney disease

    Check out this link and all the references sickle.bwh.harvard.edu/sick...

  • In the uk if you are unlucky to live in certain areas like mine then it applies to full carriers as well I once went unattended to for 7hours because the doctors were undecided how strong my meds should be

  • I also am trait and so are both my sons we all get problems I believe you can and do have problems with trait it's time it was acknowledged in the medical world they just look at you like your stupid I have even had medical people say but your white need I say more.

  • I've only just set this up today but please have a look and share

    facebook.com/pages/Sickle-C...

  • I am so sorry....I had no idea that white people can have Sickle Cell Disease. I am a black woman from Alabama, USA. my son is hemoglobin ss....I have the trait..so does my husband. As far as I know, I have never had a crisis and neither has my husband. All this is news to me that a person with the trait can have a crisis....wow!

  • I wasn't aware of this until last year when I worked in Africa and came across a healthcare professional who was genotype AS and experienced episodes of typical bone pain. The person had to be treated as someone with SCD. I look back ans as someone with the trait remember a few episodes of severe pain and wonder whether these were such episodes.

    I am a medical practitioner and as far as I am aware there isn't a lot of research into people with the trait that suffer these episodes.

  • I am woman over forty with the Sickle cell trait (AS). I have had about a full blown sickle cell crisis about six times in my life. I have had about dozen near misses. Take comfort in knowing that some of us with only the trait can experience the same symptoms as disease patients. We have the advantage of having some normal hemoglobin which I believes buys us time a little time to take action to stop a crisis or lessen its impact. As soon as any of you experience joint pain, joint warmth, joint stiffness, chest discomfort, blood in urine or whatever the first signs are for you, REST, HYDRATE (if it escalates to unbearable pain go to the ER and request IV fluids. I pray you get them), soak in hot water (it helps me deal with the pain but it is no cure. Should the pain continue to escalate, soaking will eventually be no help at all.)) and lastly you need prescription strength anti-inflammatory medicine. If the he pain becomes so excruciating that you can think of nothing else it will take a narcotic to lessen and eventually stop the pain. No shifting positions, no amount of rest, no soak in a tub, not even doubling the recommended dosage of over-the-counter medicine can help when the pain has become blinding. The best option is to beg to be treated before it reaches that point. Bad news one doctor in twenty will have any idea that a trait patient could need treatment. The worst news is that one in two hundred doctors is prepared to help you avoid or endure your sickle trait problems. However, I do have some good news. I have been placed in traction for a week followed by walking with crutches for a month and three months of walking with a limp only to make an absolutely complete recovery. I do have a relatively minor heart murmur. I cannot be certain but I feel my heart is taxed greatly when my blood pressure spikes as a result of extreme pain. So avoid the triggers like bad cold or flu, surgeries, anesthesia, heavy menstrual periods, high altitudes, anything that dehydrates you, when you can. I have found I am usually fine experiencing any one of these triggering event but if two or more occur at the same I start experience symptoms within hours.

  • I've only set this up today but please have a look and share with others

    facebook.com/pages/Sickle-C...

  • Are you still using this page. Alot of these post should be there.

  • I agree! I also have sickle cell trait but get crisis attacks! Ive been getting them since i was 10 I'm now 28! Before i used 2 just deal with them at home but now in pregnant every time i get an attack i go to the hospital! I've also asked doctors to look into this as im worried for my unborn child, & not really getting nowhere! They always say i shouldn't get any symptoms wiv my sickle cell because i have the trait! Thèy need to stop looking @ the so called facts & listen to what in saying because i know my body! Its so frustrating & stressful which then leads to another attack!

  • WE are dying from it!

  • Am so glad to have found this page. Doctors who dont recognized SCT as a disease should be ashamed of themselves. Its high time they give us the attention we need.

  • Hi ,I just stumbled across this .actually my mom brought it to my attention but I have the trait as well ,I'm a 21 year old female . I noticed something strange when I would Ben down I felt weak at the knee an slight pain ,BT I paid no mind ,it went away then would come back . Not until about a week & a half ago did I have horrible pain in my knee almost like when your foot or hand falls asleep. BT more like needles an sharp pain . An to add to that about an hour or so later as I'm trying to sleep through the pain I feel the same pain in my ankles (for the first time ) as well as a strange pain through my actual lower leg. I literally felt as if I could possible have to have my legs kut off from the knee that's how bad it felt. I tried sleeping through it. I would barely walk. I felt tightness in my knees. It was horrible. I want to say I felt similar pain in my right arm . (not as bad ,it came quick an left . ) I constantly have back pain an sharp pains in my side . (the knee, ankle ,leg pain is new !) I went to the hospital an the doc just touched my leg an prescribed meh inflammatory pills . I was highly upset bc I felt that it was something that inflammatory meds had nothing to do with . I stated to my mom kould I have symptoms like a actual sickel cell carrier an then we found all of your comments. I have asthma as well an I Kant say if it affects my breathing. I just would like to know what someone thinks an what I should do ???? Please reply an let meh know ! Thanks an sorry that everyone is going through so much !

    #bless.

  • I have the worst chest & limb pain that seems to get more unbearable with age. I have cried, fallen to my knees, balled up in agony and yet no one wants to listen. I'm glad I found this site and that I'm not losing it. But sometimes I feel I will if somebody doesn't help me.

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