Follow the trait to cure the Disease - Sickle Cell Society

Sickle Cell Society

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Follow the trait to cure the Disease


I am 43 and it sadden me that though trait is not the disease you care not people are suffering. I have suffered since a child and 2 doctors have said they believe I have been having crisis. Now less skip me and go to my brother kids whom traits have them in the hospital. I do believe that some people with trait are getting bad reputation with doctors who put them off as crazy then give them the wrong meds to help. The best thing that happen to me was a military doctor at a free clinic, told him my horrible medical history, got blood work back and he told me what to do put me on folic acid told me don't stop it, told me I probably end up on dialysis told me what to do. He couldn't believe all the blood transfusion I had , low potassium, blood clots, kidney issues all this since I was a kid but you say trait don't effect us now I watch my brother kids suffer. I have spent 22 years of my life in hospital and the only thing hemodoc can say is trait. Yet it is not important to notified all doctors that encounter pt with trait that they may have medical issues so they don't treat them like they crazy and give them to many meds that are just going to hurt them. I went from 23 meds down to 10 due to a free clinic for the homeless, who thought it was crazy that no one seen i was sick. I literally feel like my body just attacks itself cannot move joints swell, my eyes even turn yellow that's right let me not complain I cannot brush my teeth had crisis Every time I had a kid which made them take them at 6 months cause I only got trait. Sorry my family trait is only costing tears and pain a lot of still born babies, I think only 4 out of 12 of my brother kids still have sleenp. By over looking what trait itself does to people is costing millions of dollars to be wasted and pts are dying from getting improper treatment. It's like treating a person with symptom of heart issues, sores ,memory loss with 5 medicines for each symptom when all they needed was a shot for syphilis, though today many still die over treated from syphilis because the symptoms were treated individual. Let us not allow people with trait to be over medicated and undertreated because the symptoms are not the DISEASE yet the Trait is how you shall cure the Disease.

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