Sikcell: People living with Sickle Cell

We still Hope

Newbie on board!

Hey!

I'm Neke. I'm new to this site and I am glad that I found it. Since childhood I have always felt alone with this disease being as though my cousin and I are the only ones in the family that have it (and I didn't find out he had it until I was 18). Nevertheless, I want to start connecting with people that have this disease. I know that I am not in it alone. I would also like to know others experiences, so I am glad I found this!

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Permalink Reply by GL Wilbert on December 2, 2013 at 5:39pm

Hello Neke,

Welcome and no you are not alone, In order for us to help you, can you be more specific about what experience you are having or have had? There are plenty of members that can help as many have Sickle cell or family members have the disease. Knowledge is KEY in understanding and controlling this disease.

Ask all the questions you like and we will get back to you ASAP!

Again WELCOME and I will be sending a friend request after this.

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Permalink Reply by Neke on December 13, 2013 at 7:20pm

Thank you for your response! I have Beta Thal. I usually don't have many attacks but I was just in the hospital for 10 days.. this was one of the worse ones i've had in a while. Pain in both legs and right arm.. while in the hospital i got fluid in my lungs (i think from the IV), I had E.coli in in my urine, and an up and down fever, and i had 2 packs of blood transfusion. Thank God I am out now. I was wondering if anyone else has been through something similiar to this?

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Permalink Reply by Pam on December 3, 2013 at 9:30pm

Hey Neke, Welcome! We all have lots of experiences. I have started to try and document some of my experiences by vlogging (video logs). Here is the link to my youtube, check it out when you can. https://www.youtube.com/user/LifewithoutSCA

-Pam