The Truth About Sickle Cell Trait For Me - Sickle Cell Society

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The Truth About Sickle Cell Trait For Me

Shellztellz profile image
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My mother had the Trait and it got passed down to me. My mother had pain all the time. She was in and out of the hospital and on all types of medications. Unfortunately, she lost her fight and passed on at the age of 49. Because of what I witnessed with my mother I have been reluctant to seek medical attention for my illness. The treatments that my mother was receiving was strong pain meds at first, then she needed blood thinners because she developed blood clots in her legs(another complication that can develop in people with blood disorders like ours) She was using an oxygen tank after some time because she was having breathing problems and trouble going up the stairs. After she got some mesh implants to catch any blood clots that got free, it was down hill from then. Her legs started changing color and she would get sores on them. She started losing a lot of weight. She started losing control of her bowel movements and soon after that she needed to stay in the hospital, then God called her home.

It is my honest opinion that it was a combination of things that led to my mother's death but if I had to sum it up into one explanation it would be the lack of knowledge of how to treat our disease and the acknowledgment from the medical industry that the trait in more cases than they would like to admit is a severe disease of its own.

I have been feeling pains from I was little, the pains started to get severe after I started having children. I have shooting pains in my toes and fingers, pain in my legs and arms, when it's really bad I even get pain in my jaw and spine as well as migraines. My mother told me to drink a lot of water and rest when it got bad, this I do everytime I have a crisis. Through the years I also have started to take note of what triggers my crisis, this is very helpful! Alcohol is the number one trigger for me, next is overexertion and you must stay hydrated. I also try not to take medications until I have to because sickle cell on its own can damage our organs, if you then add in a bunch of medications that side effects can also damage your organs, the odds of a person getting damaged organs is then amplified. So I only take medications when its severe and manage the regular pain lets call it with natural pain medication. I also elevate my legs to help with blood flow this is also helpful in preventing blood clots from forming in them. I happy I found this forum because more information needs to be out there about people like us.

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Shellztellz
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MattBrutlag profile image
MattBrutlag

Everything you are doing is excellent. You are right about hydration being key. The only thing I would add is to take a daily multivitamin and eat plenty of fruits add vegetables. Sadly this is good advice for everyone not just people with sickle cell trait and disease but a lot of us don't do it...

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