Sickle Cell Society
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My SST Experience

Hi Lory, don't mean to alarm You, I was born and Diagnosed with SST, which is a Trait You are born with, maybe the Doctor didn't test You for everything or He may have missed something, The Trait is something You are born with; At an age to where I could understand, My Mom told Me I had it and that the Doctors said I would never endure any pain or symptoms, or any kind of problems for that matter, lies They told; At the age of 30 I started having Migraines, I'm 46, so from then until this very moment, I'm an Anemic, I suffer from Neurapathy, DVT, Edema, and chronic back spasm, I also suffer from My legs swelling due to retaining fluids from My thighs to My toes; At 1st I thought ok maybe I'm having problems now due to the fact that I had worn heels since age 12 & it was just catching up to Me, but after being diagnosed with those I've named, I began doing research on SST & found out that My SST coincide with all My symptoms with having pain; You may want to do a lil research Yourself & also have everything checked, glad I researched it for Myself, for I would have been blind of the facts of not knowing why I ensure so much pain, I've learned a lot thru out My years & still learning; Hope this helps; Maybe Your Mom or Dad may wanna go back & get Blood work done because as I was told & from what I've learned, it could only come from Your Mother or Father; Glad You're doing Better!!!!

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oldestnewest

I meant SCT!!!!

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trisaj

I’m sorry you have suffered so much fromSCT. We too in my family suffer. I have pain almost daily now. Kidneys, liver and spleen ache and burn. Legs swell. Sharp bone pains. Symptoms worse with extremes of hot or cold. Storms. Or weather changes. Shortness of breathe. Excruciating abdominal pains. Just can’t move at all some times. And I started getting sick really bad in mid 30s. Was very active with almost no symptoms till then. I always had trouble running. It would give me bad chest pain and shortness of breathe but I thought I was just weak or something. Otherwise I was fine. Now... you would think I was a teenager with full disease how sick I seem to stay at times. But it can be managed. And makes me more compassionate. Also can’t live without my nutritional supports. I pray it gets better for you.

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