Sickle Cell sucks: I'm a 26 year old... - Living with Sickl...

Living with Sickle Cell Disease
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Sickle Cell sucks

I'm a 26 year old female that diagnosed with Sickle Cell, I always knew my mother have the trait but she was never told that I had it from birth, How could the hospital not tell my mother and when I was small going to my check up as a child why didn't anyone detect it when I was growing up

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Sorry to hear you didn't know you had Sickle Cell disease. The doctors definitely missed something. Doctors and physicians with the the most intellectual intelligence miss the most important Clues and signs. In my case the doctors missed the clues that I was going to have a crisis with the trait. The doctors didn't take my concerns seriously. A doctor actually told me that I didn't need to worry and she said that she was only concerned with pregnant women and their babies and that I would not have any problems with the trait, while be told this I thought what I am I chopped liver?"after reading and educating my self I found out this information that the doctor gave me was made from ignorance and was not the truth. I found out women who have decided not be pregnant have and do experience complications from the trait just like anyone else.Because sickle cell trait is connected to the disease. Fast forward to 4 months after I was told that by two different doctors I ended up in the hospital for Sickle cell and I was having my first crisis. While in hospital for a whole week I was having problems with my hemoglobin and my oxygen level was very low. I learned anyone can have problems with Sickle cell Trait and needs to be treated seriously. I thank Jesus I am doing a lot better today. I still have problems from sickle cell trait such as very painful chest pain and I still have problems with my oxygen level, one minute my oxygen is high and the next it is low. I hope things gets better for you. You will be In my prayers Ms.Wiggins.

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Thanks so much

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You are Welcome.

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I agree with but I sickle cell is so complicated that few doctors understand it. It really has evolved over the years, I remember when they claimed only blacks could have SS. Wrong. I know it hard to diagnosed even today I bet its still being misdiagnosed. I was diagnosed in the early 60s with the trait then in 91 was told I didn't haven't it or the disease. I was told that the early tests were done when the measuring of the blood count was off. Go figure. But I still have low blood always have sometimes it drops real low always have. Growing up I suffered with leg pains still do. When I was growing up the drs couldn't find out why. Blamed it on me being anemia. True. I went through illnesses after illnesses growing up from thinking I had two gall bladders until I was I nineteen and had surgery. Found out one was a cyst connected to my gallbladder. That was in 69. Today it probably would be caught a lot quicker. But I guess people have to go through something to make things better for others. Somewhere in some class drs might be reading about my case and I would never know it.

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Wow your story shows your strength. Yes I agree it has evolved there's more research being done on sickle cell and sickle trait.

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Thanks I have a strong support group

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It was generally believed that those with the trait cannot suffer the effects of SS but medicine has improved and now many Drs know some with the trait can actually experience such crises. It is also true many Drs are ignorant about the disorder and trait persi, so educating ourselves and insisting Drs take us seriously is crucial.

Furthermore, it is also important to note that while some have very early episodes of crisis, many have it years later. It is just important to do the necessary tests, keep yourself informed and prepared.

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PEOPLE THAT HAVE THE TRAIT

HAVE CRISIS

I HAVE THE DISEASE IT A WHOLE OTHER BALL GAME

IM 47

I WENT TO ST JUDES HOSPITAL IN MEMPHIS TN UNTIL I WAS 18

NOW I GO TO A SPECIAL HEMOTOGIST.HAD SO MANY BLOOD TRANFUSION AND HISTORY OF DVT AND EMBOLISM ALL THIS COMES WITH HAVING SICKLE CELL DISEASE

MY MOTHER HAD THE DISEASE AND MY FATHER HAD THE TRAIT. I HURT SO BAD TO MY BONES

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I going to say something most will think is ignorant and it probably is. I have to ask because Im a christian woman and I believe in speaking things into existence and with that being said. So many doctors put us off when they dont know what to do because they are taught by man. I have heard of them curing this in other countries so why cant we do it here. Why do this country let people suffer. Have anyone looked into and tried herbs and a very strict diet change. No processed food, no meat and milk and herbs for oxygen and blood and pure water(alkaline spring). I asked because i recently watched a few videos by a guy name Dr.Sebi who cured people of aid , cancer and sickle cell and won in the states when he proved it by bringing 79 patients into court with him! Just wondering. Maybe all this horrible stuff we and our parents put in there bodies somehow jacked us up and as we ate the same things it worsen the issue. Just a thought.

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Hello MrsWiggins, that's my issue, my mother had the disease and even though I was born early at 6months, I was born at Shands Hospital in Gainesville, one of the BEST HOSPITALS in Florida, but you would've thought that with me being born premature, that they would've tested me for everything, well that was the 1 thing they missed, I didn't get diagnosed until I was 26, I'm 31 now and these past few years have been pure hell for me, and even though I remember staying home a lot because of all the pain that I used to be in and goin to numerous of Dr visits, they never found anything, only diabetes when I was 19 and it was gestational diabetes and downhill from there after I had my son, but they didn't even detect it until years later, I remember being active playin sports-volleyball, cheerleadeing, and track but now my life is completely different, I'm still young but I don't go anywhere barely because I'm in constant pain,im always in the hospital, I am suffering from kidney disease now, and just like I said my life has been hell dealing with this pain from the sickle cell, kidney disease, fibromyaligia, & rheumatoid arthritis, and just recently diagnosed with osteoarthritis in my hip, I have to take strong pain meds 4--6 times a day...Percocet 10/325..its a constant battle with people who don't know my pain!!!

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Hi, My name is Linda, I'm 62 years of age both my parents were carriers and it wasn't until I was accidentally run down by a friend on a bike and went into intense pain that a week later while hospitalized that my family was told I have SS then years later I as a twenty-something was told I have almost equal portions of S/C. So, while my crisis are less frequent I have some of the same experience's of others with SS. Recently, I had what I thought was a SC Crisis but, all of my lab work dis- proved that but, still don't know what the cause was pain localised itself in my left hip, left thigh and left knee but, was quite severe it took me 3 1/2 Oxycodone to get my pain to a manageable level. Labs still show protein running high and my Hemotologist, is working to find out what my true issue is. Keep fighting, I can understand someone born in my era not being told(1955) but, not yours. Please check to see when laws were charged to make sure this SC testing was made mandatory. Blessings.

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If I was I would get my health record and make sure there isn't a mentioned of the disease and they didn't treat it. You can see if you had when you was born or not. Your blood would have been tested at every well baby visit. If you needed meds you would have been put on some, apparently you are doing pretty going health wise. Just remember if you think you have the disease and you get sick be sure to tell the drs and they can do more tests just to make sure.

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Not sure why? You are still alive, Ms Wiggins. Be grateful for each day and strive to maintain a healthy attitude. Not easy but doable for your own sakes.

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