Sickle Cell Anemia: A Patient’s Journey

a nurse is caring for a client who has sickle cell anemia and is taking hydroxyurea
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one of the keys used to go outside and play I would try to do that then I come home and very sick and have to be back in the hospital seventeen-year-old Alexandria young of st. Louis Missouri has sickle cell anemia among seventy-two thousand Americans with the disease among all Americans approximately one in 1500 to one and two thousand newborns will be diagnosed with sickle cell disease in people with sickle cell disease their red blood cells become deformed turning sickle shaped the bone marrow tries to make more red cells to make up for the loss but cant keep up causing anemia their new shape keeps them from moving properly through the body and the misshapen cells can jam up and stick to the walls of the blood vessels these clumps cut off oxygen to healthy tissue delaying a childs normal

growth and causing fatigue and extreme pain its like like a hammer being laid – like for a long time I never heard anybody scream that high and just well out and and we were like whats wrong whats wrong and handy but she would have it so bad were her eyes just rolled back up you know just roll back and and you know its just in pain just just screaming yelling and we didnt know what to do then I thought she was just talking in her sleep ER or something but she had mentioned that she was ready to go home and I said Alexandria you are home we were home now she said no money I want to go to heaven its my home and okay deep breath dr. michael devon has been Alexandrias hematologist since she was 4 years

old any headaches double vision fatigue and pain are not the only issue in sickle cell disease essentially every organ in the body can be damaged by the lack of oxygen the kidneys the heart the eyes and now we know even the brain in addition to pain probably the most feared complication is that of a stroke and right here as her silent stroke when Alexandria was 12 years old a brain scan revealed that she had indeed had a stroke I was very scared because I thought only older people would have a stroke in that – of Europe silent strokes like Alexandrias were not even recognized until a small research study in the 90s was conducted to better understand sickle-cell disease in children MRIs showed that strokes occurred when the misshapen cells got stuck in the brain and cut off oxygen

to it certain locations are the brain control your movement they control your motor ability okay there are other areas of brain that if we removed it it wouldnt alter your movement at all it would alter your ability to think area the brain in the frontal lobe is the area of the brain thats more likely to have silent strokes so most of the children were selling strokes theyre actually walking around interacted with their family in a fashion that makes people think that yeah this child is doing well dr. Dubin has Alexandria on a research protocol hoping to stop the strokes monthly blood transfusions called every sis remove Alexandrias damaged red sickle cells and replace them with red blood cells from a healthy donor the hope is that the healthy new red blood cells will prevent her from having future strokes

monitors Alexandrias condition closely including annual brain scans to look for further damage I pray constantly you know about Alexandria that she hasnt had another silent stroke the young family wont know the results until their next visit to dr. DeBaun how the clue ladies stand on this protocol it has dramatically improved her classroom performance dramatically just improved everything everything and her life is just completely turned around who is just like like a switch man it just totally changed her she start to grow congratulations thats fantastic straight As I was a test results we had the MRI of her brain performed a couple of days ago its to make sure that she hasnt had any new episodes of silent strokes thats right and the answer is no no evidence of progress so its all done and its really good news okay you

sickle cell anemia, anemia, SCA, stroke, blood, blood cell, blood cells, blood disorder, blood disorders, hematology
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