Sickle cell is a devastating disease that has plagued the African American community for years.
According to the National Heart, Blood and Lung Institute, about 100,000 Americans have sickle cell disease, with 1 in 13 African American babies being born with the sickle cell trait and 1 in every 365 African American babies actually being born with sickle cell disease.
Texas State Senator Borris Miles knows all too well about those statistics and the impact, because he was diagnosed at birth with having sickle cell disease.
Over his 53 years, Miles states that sickle cell disease has affected him both physically and mentally. He always felt he was living on borrowed time and three years ago he was told by doctors that sickle cell disease was deteriorating his kidney and he had to receive a new kidney really soon. Another serious factor was that kidney disease ran in his family and was seemingly hereditary, in that his grandmother died of kidney failure and his mother is currently on dialysis.
Miles has been an extremely successful businessman and influential elected official over the course of his life, but it was at that moment when he received that news from his doctors that he realized that no money or influence could find him a match and get him the kidney transplant he so desperately needed.
He needed a miracle and had to wait and endure the pain of sickle cell disease and kidney disease until a suitable match was found. Three years later, his prayers were answered.
A few weeks ago, Sen. Miles received the news he had been waiting on for some time, doctors had found a match and ushered him in to have emergency surgery to replace his diseased kidney.
Miles is recovering, but is relieved to know that organ donation saved his life and has given him a renewed sense of purpose and a stronger faith in God.
“God is good, and I am eternally grateful for this blessing that I have been granted. Every breath is a gift, and I never take one for granted. I have so much more work to do,” said Miles.
“They told my mother that I wouldn’t live to be 12 years old and when I reached 12, I was told I wouldn’t live to see 21 years of age,” Miles continued. “That is why I have always lived me life to the fullest because tomorrow is not promised.”
Miles states that receiving the news that he needed a new kidney, but not being able to do anything about it because it was contingent on things beyond his control, was a challenge.
“It was hard and it was a struggle,” said Miles. “I have always been accustomed to making things happen, getting things done, being in charge. I have always been focused on fixing my own problems and other people’s problems, but this was completely out of my control. The most thing I have learned through this journey is that it is important to always have faith, because it’s easy to get down in this circumstance, but faith will guide you through.”
Sickle cell disease is a lifelong illness and if affects every person who has the disease differently.
According to experts, sickle cell disease is a group of inherited red blood cell disorders. People who have sickle cell disease have an abnormal protein in their red blood cells. As aforementioned, here in the United States, the majority of people who have sickle cell disease are of African ancestry. Early signs and symptoms of sickle cell disease include swelling of the hands and feet; symptoms of anemia, including fatigue, or extreme tiredness; and jaundice.
Over time, sickle cell disease can lead to complications such as infections, delayed growth, and episodes of pain, called pain crises. Most children who have sickle cell disease are pain-free between crises, but adolescents and adults may also suffer with chronic, ongoing pain. Over a lifetime, sickle cell disease can harm a patient’s spleen, brain, eyes, lungs, liver, heart, kidneys, joints, bones, skin or other areas of the body.
Typically, a blood and bone marrow transplant is currently the only cure for sickle cell disease, and only a small number of people who have sickle disease are able to have the transplant. There are effective treatments that can reduce symptoms and prolong life. Early diagnosis and regular medical care to prevent complications also contribute to improved well-being.
Miles is grateful to the doctors and healthcare professionals who oversaw his transplant and has actively begun championing efforts to encourage everyone to consider becoming an organ donor in order to help save more lives, as his life was saved.
“Honestly until this happened, I didn’t weigh the importance of organ donation, but it is so very important, because it is a part of the circle of life,” said Miles. “I am encouraging everyone that I know and come in contact with to register to become an organ donor at Donate Life Texas, because you never know whose life you are going to save.”
For anyone needing a kidney, it is widely recommended that you turn to your family and friends first. Although family is always a good starting point, they may not be a match, so when you cast a wider net and sign up for transplant centers locally, and in other areas such as San Antonio, Galveston and Tulsa, you will have a greater chance of finding a potential match.