The doctors never told my mother that by she and my father having Sickle Cell trait, they were at risk of me having Sickle Cell. It turns out her doctor knew this information and withheld it from her when 6 weeks after my PICU test, I was diagnosed with SS. She kindly threatened to sue them, and they responded by giving her all of her money back to pay for her hospital visits.
My mom and I consistently had to fight the system, and always be one step ahead when it came to my medical care. My mom being a single mother until I was like 4 did the best she could with raising me & getting information.
In late 80s, several diseases were coming to the surface in the medical community with minorities and sickle cell disease was very limited in education and information.
I was in and out of hospitals due to dehydration, but managed to live a semi normal life until high school. In the 9th grade I suffered a major health scare where I had to have my gallbladder removed and found out I was venturing into early liver failure. My gallbladder has been collecting stones since I was 4 years of left over blood cells from past Sickle Cell crises. I was severely jaundiced, and my urine was no longer the deep yellow, but black like coffee. My body was breaking down my blood faster than my body could pump it, so I was transported to the Children's Hospital in Atlanta at Egleston's, where I had my surgery and liver biopsy. I would then undergo transfusion therapy for 6 months to give my body new blood.
Once in high school, my personal life and emotions would all be affected. My doctor decided to place me on Hydroxeurea chemo pills, where I am now able to live a semi normal life. I worry if I'll ever be able to have children because of the pills. I've been graced thus far to finish college, start my own business www.gracemedia.biz, and begin earning my masters in pastoral counseling. My goal with my first book, "Back to The Fathers Heart," is where I compare sickled cells our struggle with sin.
My motto is, "I have sickle cell, it doesn't have me!"