Hey Everyone! I just joined People Living With Sickle Cell and I am suddenly filled with so much hope! I live in MN where only 12% of the population is Black and where I have probably only met 1 other person with sickle cell. I have felt so isolated. It is so hard living with an illness that you have to convince the doctors that you really are suffering from excruciating pain on a daily basis. African Americans already have to deal with the day to day racism that lives within our society. Add to that a disease that affects this population almost exclusively and the fact that it is characterized by extreme pain that requires narcotic pain medication and you have a recipe for extreme prejudice from doctors and hospitals. I have been treated so badly since I transitioned from pediatric to adult care.

At the age of 23, I had my beautiful baby girl (who only has the trait thank God) and a year later developed pulmonary hypertension. I was in the emergency room almost every week with chest pain. At this time I hadn't been diagnosed with the pulmonary hypertension so I basically presented at the hospital with excruciating chest pain EVERY SINGLE WEEK! It got to the point where the doctors told me I was lying, I wasn't having pain. They told me I was addicted to Demerol and was having psychological problems and that I was lying. I came into the hospital via ambulance with seizures, a 105 degree temp, and a pain level of 20 out of 10. They denied that my ambulance ride was medically necessary, they told me that I needed to get up and walk across the ER to give them a urine specimen when I told them I was in so much pain and so cold because of my fever. They wouldn't even take my temp. They told me I was just fine and that I'm okay to walk. They forced me to get up and after I returned from the bathroom and they took my temp, then and only then did they get concerned when they saw it was 105. They didn't want to give me any pain meds until they got the test back that said I had pneumonia and my lungs were filled with fluid.

Because of my insurance I had to continue to go to that hospital. I begged them to help me with the chest pain. My o2 sats decreased and decreased to the point they told me that there was nothing they could do. I finally got Medicare and Medical Assistance and my mother took me to the U of MN to the sickle cell clinic they had there and on the very FIRST visit, they diagnosed me with Pulmonary Hypertension, and secondary lung disease and discovered I had had a stroke in my lungs. ON the very first visit. I get so mad everytime I think back to what they put me through. All because the doctors wouldn't listen. All because they saw color and drugs and NOTHING else mattered.