Sikcell: People living with Sickle Cell

We still Hope

Me

Hello my name is Tawanda, I just came across this site from veiwing someones myspace page. I have Sickle Cell Disease. Me myself I dont't take any medicine for my disease except folic acid and pain miedicine. I do attend a Sickle Cell clinic in chicago, but sometimes I feel the doctors are basically guessing on what medicines to give me anyhow. It can be hard going through the pain and feeling like no one understands. That one of my main reason for being on this site and hopefull to get some insite on how other feel about the disease and what works for you.

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Comment by Ade Dotun on February 19, 2009 at 3:43pm: i agree with sickle cell warrior, my hematologist just started me on hydroxyurea and it seems to be working well so far, and i usually always have some dilaudid pills in case i need it for pain.

Comment by Sickle Cell Warrior on January 29, 2009 at 6:23am: Hey Tawanda,

Welcome to the forum. It's always nice when we get new members. Did you know the Chicago clinic is one of the most progressive sickle cell centers when it comes to pain? At least that's what I've heard...

I do agree with you on the guessing tip. The practice of sickle cell control is still an undiscovered science, and majority of doctors don't have enough training or experience to deal with the wide range of sickle cell illnesses. Hopefully as we create enough evidence based research, there will be resources for medical practitioners so that they can learn how to treat us right!

If you have any specific questions, please feel free to ask.