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MY Sickle Cell Disease Page |
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Hi my name is Kayla Smith, I am a 24 year old Sickle Cell Disease Patient (SS) here in Oklahoma City. I was diagnosed at the tender age of 6 months old. I am here to share a little knowledge of this Disease an dmy own experience of this serious Disease.
Sickle Cell disease si a hereditary blood disored found in people of the Afican American and Hispanic heritage, In Sickle Cell (SS) an abnormal hemoglobin in the red blood cells may cause them to deform into a sickle or a cresent shape in the presence of low oxygen levels. These blood cells have a hard time passing through capilliaries which cause a great deal of pain-Sickle Cell Disease is a serious but manageable disorder. |
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My experience with Sickle Cell Disease (SS) my childhood was hard on me, I was constantly in and out the hospital. I've had ear infections, bone infections, losts of pain crisis about every hospitalization , I had to have a blood transfuions cause my counts showed that I was making the the cresent Sickle Cell space as soon in th picture on left and that I was causing my own pain crisis. My pain crisis would last 7 days! Hardest thing about this disease its very tricky..for example, the weather would change...like it would be hot one minute and cold the next....when that happens. It also cause me to go into a pain crisis...and when I was a child I could never pain anything...if I did I always end up in the hospital in a pain crisis, like school field trips or something like that. |
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Now as an Adult with Sickle Cell Diease (SS) in 1991 I was put on the blood transfusion program because of constant pain crisis...during that time they found out that I had a high iron level of 20,000 cause of all the blood tranfusion that I had when I was growing up. So they put me on this medicine called Desferal...for 14 weeks at a time...If I wasn't on this medicine, My Iron would attack the heart , liver, and kidneys...My Iron level went down to 5,000 since 1991...which is good...normal iron level is 250 therefore I get blood transfusion (2 UNITS) every 5 weeks now (currently) and Desferal in my infuse-a-port for 48 hours, for 3 weeks..cause this year (2001) I have a major set back my iron level went back up to 13,000 which is not good, now currently I have to get Desferal 3 times a weeks...I do have a infuse-a-port I am on my 4th one....I like it cause its easy and I dont have to get stuck 17 times cause of my viens were used all up....during my childhood... Its easy on me, nurses, doctors, family members. I am praying that my Iron level will go down...I have all my faith in God....that he once again will bless me....! |
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My Family- I have one sister (DeWayna Smith) she too is an Adult Sickle Cell Patient (SS) she is 23 years old now. I also had 2 Aunts with this Disease from this Serious Diseases...Aunt Geneva was (41 years old), Aunt Abigail was ( 37 years old)...My mother and father are carriers of this serious disease...they both have the Sickle Cell Trait...This disease is on my mother side of the family....As it states above this is a heredity disease my Grandparents both had the Sickle Cell Trait...My mother is number 11 of 12....out of my mothers sisters and brothers 2 out of the 12 got Sickle Cell Disease. The 9th child got it Which was My Aunt Geneva...The 12th child got it which was my Aunt Abigail...! I truelly encougae African Americans out there to be tested for this disease....but now today they doctors are testing every African American Baby born will be tested for this serious disease....which is a wonderful thing to do...! the ribbon that is shown represents Sickle Cell Awerness...! |
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Support Groups-I encourge people to attented their Sickle Cell Supports Group in the home state...I do attented my Sickle Cell Disease support group meeting here in Oklahoma City on the 4th Tuesday of the month...I also attented The Sickle Cell Disease Association Dinner in Tulsa, Oklahoma.
My encouragement to all with Sickle Cell Disease....prayer is the Key that Unlocks the door....you can beat this disease take care of yours self and have faith in God..! I thank God that he has brought me a mighty long way...I havent had a pain crisis since 1991 (11 years now)...God is Good ! God Bless you all...! |
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