Well-dressed, successful entrepreneur Roger Gore, 58, is the CEO of Gnatural Spirits. Upon casual observation, it could appear that success has come easy for Gore. However, he credits his achievements to painful lessons hard-earned through his battle with sickle cell disease.
“I endured a lot and often felt alone, as my siblings didn’t have the disease,” said Gore, who was diagnosed with sickle cell in early childhood.
The Sickle Cell Disease Association of America defines sickle cell disease as an inherited blood disorder affecting the red blood cells. Hemoglobin, the main substance of the red blood cell, helps cells transport oxygen to all parts of the body. People battling sickle cell make a different form of hemoglobin, called hemoglobin S.
“Red blood cells containing mostly hemoglobin S do not live as long as normal red blood cells (normally about 16 days). They become stiff, distorted in shape and have difficulty passing through the body’s blood vessels. When sickle-shaped cells block small blood vessels, less blood can reach that part of the body. Parts of the body that don’t receive normal blood flow eventually become damaged,” according to the Sickle Cell Disease Association of America.
Due to the red blood cell’s decreased ability to carry and distribute oxygen and the propensity of the red blood cells to block blood vessels, the disease is characterized by bouts of excruciating pain and high levels of anemia and fatigue.
Many affected by the disease suffer from organ complications and/or early death.
According to the Centers for Disease Control (CDC) Data and Statistics on Sickle Cell Disease, complications associated with the disease include severe anemia, bone degeneration, loss of mobility, acute and chronic pain, infections, pneumonia and acute chest syndrome, stroke, and kidney, liver, and heart disease.
“Estimated life expectancy of those with SCD in the United States is more than 20 years shorter than the average expected. Quality-adjusted life expectancy is more than 30 years shorter,” the CDC reports.
Further, many with Sickle Cell Disease die during early childhood or adolescence.
Sickle Cell Disease is a common cause of childhood stroke, as such the CDC has recommended that children and adolescents ages 2–16 years with sickle cell anemia (SCA) be screened annually with transcranial Doppler (TCD) ultrasound to identify those at increased risk for stroke.
Raising Awareness About the Physiological and Psychological Effects of Sickle Cell Disease
Sickle Cell Disease is the most common inherited blood disorder in the U.S. and affects approximately 100,000 Americans. Even so, many people are unaware of the nature of the disease and its effects on the population diagnosed with it.
First there’s the excruciating pain.
“I remember terrible pain episodes lasting up to a week. The pain is like having a heart attack in different parts of your body simultaneously. There is no medication that doctors can give you to stop it. The only cure is time, fluids and prayer,” Gore told The Informer.
Despite their extensive healthcare needs, many persons with SCD have difficulty accessing appropriate care and report feeling stigmatized and often having their symptoms dismissed when they seek medical care.
Although, to date, there is no universal cure, advances in research have shown promise for some with the ailment. Still, there are many strides necessary when it comes to sickle cell disease.
In addition to the pain with sickle cell crises, there are also social, familial and mental health challenges to navigate when considering the disease.
“Partners of adults with Sickle Cell Disease also face unique challenges, such as frequent crises or hospitalizations, psychological stress, financial strain, social disruption, and stigmatization,” according to “Psychosocial Challenges of Persons with Sickle Cell Anemia: A Narrative Review.” ”Primary caregivers for children and adolescents with [sickle cell anemia] often have limited time for socializing within the family, leading to anxiety and frustration for caregivers and patients.”
Those affected by the disease may also feel tremendous guilt regarding the economic and physical burden of their caregiving on loved ones, as well as a sense of shame about being chronically ill.
Initially embarrassed, Gore did not reveal his illness so that he could be treated normally at school. Given a prognosis of death by the time he would turn 18 years old, his father fought to give his son an active normal childhood.
“’Let’s do as many things as they say you can’t do,’” Gore’s father encouraged. “So I rode bikes, was an active kid, and even played sports. It taught me early not to have limitations on myself based on what someone else said. I developed extreme resiliency and refused to let the diagnosis define me.”
That early teaching of refusing to be defined by limitations helped Gore develop a mindset open to limitless possibilities, which has carried him throughout his entire life.
“Your mind is more powerful than anything you possess. There is energy in thoughts that will allow you to achieve despite the most severe physical challenges.”
Gore is no longer embarrassed about sharing that he has sickle cell disease. He considers it as part of his testimony. He attributes the lessons he learned to overcome odds, push past physical and mental limitations, and become fearless in the face of challenges to his success and positive outlook. He also leans heavily upon his faith.
“As a child, I felt alone but we are never alone. God is always with us. Your medical diagnosis does not define you, God defines you but you have to do your part. You have to change your mindset.”
The author of this story also suffers from Sickle Cell Disease.