Gates talks Sickle Cell Disease at LWB

James Gates, author of "The Essence of Sickle Cell Disease" presented Lucille Armstrong with a rose during Luncheon With Books, as a token of his gratitude for her help with the research for his book. (Photo by Donna Summerall, DTL) 
Staff Writer

Sickle Cell Disease, also known as Sickle Cell Anemia, is extremely rare, and is most prevalent among African Americans. Sickle cell disease is a group of disorders that affects hemoglobin, the molecule in red blood cells that delivers oxygen to cells throughout the body. People with this disorder have atypical hemoglobin molecules called hemoglobin S, which can distort red blood cells into a sickle, or crescent, shape.

Signs and symptoms of sickle cell disease usually begin in early childhood. Characteristic features of this disorder include a low number of red blood cells, repeated infections, and periodic episodes of pain. The severity of symptoms varies from person to person. Some people have mild symptoms, while others are frequently hospitalized for more serious complications.

James Gates, author of "The Essence of Sickle Cell Disease,” talked about his lifelong struggle with the disease during the Luncheon With Books series at the Bryan Public Library. 

"A lot of people have only heard of the name, Sickle Cell Disease," Gates said. "I've had it my whole life and I wanted to write a book to explain it to people in layman's terms, not like a medical text book."

Gates said both of his parents carry the Sickle Cell gene. That is how a child is produced with the disease. 

"As long as someone who carries the gene, has children with a non-carrier, there are no offspring with Sickle Cell," Gates said. "But lucky me, both my parents had the gene. The life expectancy for someone with Sickle Cell is 40. I'm 38 now. But both of my parents were very healthy, my mother is still alive."

Gates said Sickle Cell disease is found mostly among African-Americans because it originated in Africa as a defense against the body contracting malaria. 

"I was very sickly as a child," Gates said. "Once, when my mother and I were walking to church during the summer, I was so very hot. I didn't feel well and I just wanted to go back home and lay down. When I complained to her about the heat, she just said. 'Hell's hotter! Keep walking.’”

He said he didn't realize it at the time, but she had given him his mantra for when he felt the disease was winning, "Keep walking."

"I have several transfusions throughout the year," Gates said. "I always feel better after those. There have been clinical testing for removing the blood of a Sickle Cell patient and doing a complete and total transfusion. The results so far have been promising."

He said one type of SCD is SS, which is the most severe type with constant pain and 20 - 30 blood transfusions a year. 

"I have type SC, which is a little less severe," Gates said. "But we go blind. I've had two surgeries on my eyes and early onset glaucoma. Besides probably not living much past 40, I'll never know what it is to wake up and feel normal. I have no idea of what normal is."

Gates said blood in the sickle stage is jagged and cuts the organs. The fact that the jagged cells are also being carried to and from his brain causes him to worry. He said there is no upside to Sickle Cell Disease.

"I kept a secret for 13 years from my wife and my children," Gates said. "I was ashamed and afraid they would see me differently. Due to the disease and poverty, I failed the first grade. How can anyone succeed in life when they fail the first grade? It was something that made me feel so defeated."

Gates decided he wanted to write a book to make Sickle Cell Disease easy to understand. His quest began at the Bryan Public Library.

"Lucille Armstrong is an angel," Gates said. "She always had time to help me with my research, encourage me to continue working on the book. West Point is so lucky to have Lucille. I never would have completed the book without her."

Gates said he was glad to see the book come full circle, from being researched at the Bryan Public Library with the help of Armstrong, to her introducing him as the author of that book at Friends of the Library's Luncheon With Books series.