A life with Sickle Cell disease

5 Min Read

October 6, 2012 By specialguest

My name is Leathia  but most call me Tootie… I’m now 33 but was diagnosed at birth. I had my first crisis at 4months and it’s been downhill health wise since then. I was born in the windy city of Chicago and left at the age of 4. My dad was and still is Military so we relocated to Ft Benning Ga. I just remember as a kid always being in the hospital. I didn’t play a lot because everything made me hurt. I spent a lot of time in military hospitals and fortunate enough to have never had any bad experiences or had any mean Drs take care of me.

My parents were told that I would die before I turned 12 and then it was 18,I’m 33 now. I had my first surgery at 12, they took my spleen,appendix and gallbladder. My spleen was the size of a nerf football and was on the verge of busting. Everything else they took out was strictly precaution. I’ve lived a few places and ended up in Hawaii for a couple of years. My health wasn’t to bad on a major scale but I did spend a lot of time in my pretty pink castle..that was what the hospital looked like. I ended up in a mental house for a few months because I tried to kill my stepmom and myself..I was just so depressed. So I left Hawaii and moved to Milwaukee with my mom.

My health got super bad,it’s super cold in Wisconsin and I spent every couple of weeks in the hospital due to the weird and messed up weather,winter was horrible! I’d gotten a few ports and at one point was on hydrea but I wanted kids so I came off of it, personally though,the hydrea didn’t work for me,I stayed sick and in pain.

At 19 I had a core decompression in my hip. I walked around for a year in pain because no one believed me that my hip hurt so bad, I needed up being diagnosed with A Vascular Necrosis of the hip and had to get a full hip replacement. Now both my shoulders and my left hip needs to be replaced, everything is deteriorating. After my hip surgery at some point I had to get my lungs drained because there was so much puss on them that I couldn’t breath and almost died because I kept getting misdiagnosed as having pneumonia. So I had to get my lungs scraped and drained.

I the midst of all that, I fell in love and after 5 yrs. of trying to have a baby, I had one and then another, things that I was told as a young girl would never happen for me… I had no more major problems, just the normal crisis here and there. I’ve learned to maintain and control my pain. I haven’t been in the hospital in over a year. I lost my mom, March 4 2012 and to everyone’s surprise I never got sick, I was very strong..I found God Oct 22 2011 and I believe that’s one,well the main reason I haven’t been sick and why I was strong when I lost my mom. I found out that I have the power of prayer and the power of healing in my hands. God has blessed me in so many ways and I’m just glad, I’m Me! This is my story and I hope you like it:-)


Tootie Leathia  [email protected]

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