My name is Latisha Nicole Barefield and I live in Collinsville, IL. I have 2 sons named Bernard (17) and Kevin (14). My son Jason was stillborn at 5 months because of my TTP. I am divorced from my children’s father and currently planning a wedding to a wonderful man named Mike, my light in the darkness of a deadly struggle with TTP.
I was 27 years old, a mother, wife, medical assistant and future doctor until my life changed forever. I recall the day it all began - it was so nice, I was folding clothes and getting prepared for the arrival of another son! The first sign of trouble was my lightheadedness and confusion. I was looking at my son Kevin playing and did not know who he was. The second sign something was off was the vomiting and the only thing I could feel was the stomach pains that were so bad that I could not walk. I screamed as loud as possible and thankfully my neighbor heard and was able to call my mother. My mother arrived and proceeded to take me to three different hospitals and at each one I received a different diagnosis: the stomach flu; a stomach virus; nothing related to what was actually wrong. One hospital even called the local police because doctors felt I was a victim of domestic violence, due to the bruising that had taken over half of my body.
After my visit to the three hospitals, I was simply given antibiotics and pain medications before being discharged with a follow up appointment scheduled to see my doctor three days later. My mother, my hero, had every doctor, nurse and police officer scared because she knew from my current state that I did not have three days to spare.
She proceeded to take me across the river to Barnes-Jewish Hospital and Siteman Cancer Center while I was in and out of consciousness and my organs were shutting down, something that was later shared to her by one of the doctors. My mom was loud and demanding. So much so that a new medical student looked in on me and said, “Oh my god I finally get a chance to see a patient with TTP.” I was rushed into surgery where they installed a central line. They told me in recovery that this line may never come out and that I would need plasmapherisis treatments for the rest of my life. It was at this time I was also told that because of my illness, the baby boy I was carrying, my son, did not make it. After the terrible news of losing my baby, I was also told that being at the hospital would be a part of the rest of my life and that I would need to be part of clinical studies moving forward if I ever wanted to beat this deadly blood disorder. To date, I have 19 doctors that know me and have overseen my struggle with TTP. I now have to take over 25 medications daily and go for plasmapherisis treatments every month, which is down from my previous schedule of every two weeks.
I was once told I would not live to see thirty but I AM 38 YEARS OLD. I was told that I would not be able to work but I WORK FROM HOME. I was also told that I would not finish college because of my TTP but I RECEIVED MY SECOND DEGREE IN 2009 WITH HONORS! I was told I would not become a doctor but I HAVE JUST 2 MORE YEARS TO GO.
TTP is not a death sentence! And I want all newly diagnosed patients to know that they should not give up.
TTP has changed my life because of the limits my physicians put on me. I have to take a lot of precautions because of my illness and my doctors advise me to slow down, which I’ve done, but I still live and love life for my family! The pain, weakness, loss of hair, medications, and everyday struggle of TTP can drive us mad but all TTP patients need to remember we are a select group and each of us has a purpose. We might not see it now but with our stories, we can show the world that we are strong; we will speak for the babies who are not yet born, for the medical student who chooses a career in Hematology because of TTP. There is a light at the end of the tunnel and if we work together we can get there quicker! KEEP SHINING.