Every April, the U.S. Department of Health and Human Services (HHS) Office of Minority Health (OMH) observes National Minority Health Month to highlight the importance of improving the health of racial and ethnic minorities. To honor this important observance, we spoke with several Red Cross sickle cell warriors about living with the illness.
Sickle cell disease is an inherited disease, which means that those impacted received two abnormal hemoglobin S genes or sickle-shaped hemoglobin—one from each parent. Because of their irregular shape and hardness, these sickle cells often get stuck in small blood vessels, leading to clogged blood flow. This can cause immense pain and other serious health problems for those who have sickle cell disease.
“Overall, living with sickle cell has given me a heightened awareness around my limitations, potential risks and even precautions I must take. Has it gotten tough and scary at times? Absolutely. I've experience countless pain crises and challenges with my respiratory and immune systems, kidneys, and eyes. But I always say, “I have sickle cell, it doesn’t have me.” Despite the challenges, I am able to live a good life.”
Jori Smith
In the U.S., it is estimated that over 100,000 people, the majority of whom are of African descent, have sickle cell disease and may require regular blood transfusions to help manage it. The disease occurs among 1 out of every 365 African American births, in comparison to 1 out of 16,300 Latinx births.
“Over the course of my life, I have endured many hospitalizations because of my illness, which caused me to have frequent absences from school as well as blood transfusions. My constant battle with sickle cell disease caused me to miss many days of class during every level of education from elementary school through college. Although it was difficult, I was able to graduate with honors throughout each level of schooling.”
Lyric Porter
"There are different forms of the disease—hemoglobin SS, hemoglobin SC and hemoglobin beta-thalassemia. Unfortunately, hemoglobin SS is the most common and most severe," Dr. Yvette Miller, Executive Medical Officer for American Red Cross shares. "Additionally, it’s important to note that it does not impact every warrior the same—even individuals from the same family with the exact same type of sickle cell disease might have very different experiences."
“I am blessed to have been born with sickle cell Hemoglobin SS Disease with persistent fetal hemoglobin. In saying this, I have experienced vaso-occlusive crisis in my life, but they are few and far between. I remember in elementary school, having to go to the nurse’s office three times a day for two cups of water for sickle cell management; also having to sit out of gym class to avoid possible triggers of pain. When this young, it is emotionally hard to grasp the reasons why you are ‘different’ but you learn to appreciate the need to avoid sickle cell triggers.”
Nicklaine Paul
