Sikcell: People living with Sickle Cell
We still Hope
Anybody there !?
Hey everyone, I'm a new member and I have Sickle Cell Disease.. I found this site today and I'm happy I found it. I want to be talking to people and fellow SCD individuals.
You might be saying.. shes white, how could she have it? Just like at least one phlebotomist a month asks me if im sure I have the disease and not just a trait..
OH YEAH IM SURE.. Ive been having it since birth. My childhood was def worse. I was very sick, Ive had almost 10 transfusions and exchanges and Im 24 years old now. My ethnicity is Greek.
Today I'm feeling alright, except my levels have been low and my doc doesnt know why so every other day im getting my blood tested.. Also they told me to STOP the hydroxyurea that i was on 1500 a day (thats 3 of the 500mg pills per day)
So far my kidney has a spot on it, my spleen might not be healthy and my marrow is low.
How can I be strong when all the news is bad news??
I havent been hospitalized since January.. I just got my masters in social work...
So some things are good in my life... but there is always the worry about finding a job, and getting married to a non trait man.. and maybe children in my future>?
I would love to hear from anyone and everyone.
God Bless,
DEMETRA
Replies to This Discussion
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Permalink Reply by Ade Dotun on
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Hey Demetra, welcome to the site, hope u feel at home here.. i am sorry to hear bout ur kidney n spleen...and that is a whole lot of hydrea, i only take 1 500mg pill a day n i even complain about that...i think gettin married is a challenge that we all face, esp harder for the females it seem...but thru it all, i keep positive by believing that God wont put u thru sumthin u cant handle. keep ur head up!
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Permalink Reply by ssebandeke ashiraf on
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Demetra dont be worried though am a black man but the fact is SCD mostly affects the blacks so feel free with God all things are possible you will get a man for marriage you want
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Permalink Reply by akanji on
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Hello Demetra, good to know of fellow SCD or (better known as Warriors). the feeling that u are not fighting alone is comforting.
a Nigerian (Africa), a B.Sc holder in mechanical engr., married with three kids, will be forty yrs old in jan. 2011, hope to celebrate then.
keep strong, all we have b/4 us are challenges, we determine how we overcome...God wiil always see us thru, He wants the willingness frm u. Regards.
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Permalink Reply by Demetra Efstathiou on
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You have all been very helpful and your messages give me strength thank you fellow warriors.
God Bless
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Demetra you can live longer dont lose hope in Uganda we a 79 year old man who has lived with sickle cell and now has grandchildren if you lose hope you will die earlier and if you donot lose it you will live longer and see your grand children
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thanks for the info ashiraf, will reset my goal post to 80 yr +.
Regards
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Its been great hearing from you! I have always known it to be a predominantly african thing and other races just have the trait. I have just started work after graduating from university and it has been a big challenge getting employers to understand my situation but so far so good. Do not worry have been through some tough times myself but God has been good.
The best advice I can give you is to pray, keep hydrated, and STAY POSITIVE! Perception is more than half the battle!
Its great meeting people going through the same struggles as me! xxx
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I know how you feeling, being one of those people born in the mid 60's they didn't know much, I was always sick in and out of the hospital, mom's scared to let me do anything.Today i've been married 20yrs. with 2kid without SC or the trait, plus I have not been in serious crisis since I was about 12yrs old. all praises to GOD
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Permalink Reply by Myra Davis on
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wanted to stop by and say HELLUR (in my madea voice)
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You are all so kind. Thank you for your caring and warm wishes.
I am officially a Licensed Social Worker. I passed the exam yesterday!! Things are looking good and all is aligning!
Follow the footprints of the Lord. They will lead you through troubled times and brighten your life.
I wish you all hope faith love and peace.
Demetra
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