SCT causing aches: I’m so glad people... - Sickle Cell Society

Sickle Cell Society

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SCT causing aches

dlw_tricey profile image
7 Replies

I’m so glad people are finally talking about this. I and my daughter both have SCT and we both suffer from aching and join pain at times. A study needs to be done so people understand this is happening. I am glad so many people are sharing their stories. SCT is causing this whether people want to believe it or not.

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dlw_tricey profile image
dlw_tricey
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7 Replies
Luvnuallways profile image
Luvnuallways

We need all the people experiencing it to speak up in a way that we can capture it

Laddylowe profile image
Laddylowe

You are absolutely right,it's a struggle trying to convince them that we feel things also considering be we can die from the trait, you'd think they would get it... isn't that the reason they gave it to us in the first place 🤔

Finalybeingheard profile image
Finalybeingheard in reply to Laddylowe

Amen sister!! I just got out of the hospital with Sepsis. And now it hurts to breathe on my right lower back all the way up my shoulder.

Laddylowe profile image
Laddylowe in reply to Finalybeingheard

Wow I'm sorry to hear that but I hope we all get help soon

seamsbydeb profile image
seamsbydeb

I also experience pain...flu like aches if I don't get proper rest...had to retire early because I couldn't make a full week of work. I was resting on the weekend just to work the next week. My latest diagnosis is arthritis, after 11 years of trying to get docs to see it's all related to the sickle cell trait smh

LupusDiva45 profile image
LupusDiva45 in reply to seamsbydeb

I was diagnosed with lupus among a host of other things. My son has joint pain issues a lot, and after every test, everything came back negative......but they don't believe it's the trait that is causes his joint pain. SMH

LupusDiva45 profile image
LupusDiva45

My youngest son and I both have the trait. I was also diagnosed with a host of other things, including lupus, and I am wondering if the trait predisposed me to these other illnesses. Most doctors don't even believe that the trait causes crises, anyway. I believe they do.

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