When Patricia McGill was 13 and learning that she had inherited sickle cell disease, she did not think she would reach 30.
But now she and her family are celebrating McGill’s 80th year.
McGill is one of the nation’s oldest people with sickle cell disease, living decades past age 52, the life expectancy of someone with the disease, which has a disproportionate effect on Black people.
Born and raised in Houston, McGill was diagnosed with sickle cell disease after years of mysterious illnesses. “I was sick a lot, and when I did get sick, it was more serious than if my siblings got the same illness,” McGill said.
Despite her condition, McGill was determined to live life fully. In the 1970s, according to Public Health Reports, life expectancy for people with sickle cell disease was less than 20 years.
“I decided that if I might only live to about 30, which is what I initially thought, I would do everything I wanted to do,” she said.
In 1963, McGill enrolled in Hampton University in Virginia, 1,300 miles away from home, to study elementary and special education. School was challenging for McGill due to her illness and being so far from home. Even minor colds could escalate into full health crises.
Still, McGill accomplished two of her goals — she became a teacher and a mother, eventually having three children. For 37 years, she worked with students with learning disabilities, driven by her deep understanding of their struggles.
McGill has orthographic dyslexia, a learning disability that affects her ability to spell. Her children also have learning disabilities, she said.
“I knew there were others like us who needed support and understanding,” McGill said.
“I knew there were others like us who needed support and understanding,” McGill said.
Her commitment to her students extended beyond academics. “I always made it a point to show them that they were not alone and that they could overcome their challenges,” McGill said. Her dedication earned her lasting respect and gratitude from many students, who keep in touch with her even after two decades after she retired.
Throughout her life, McGill has relied on a strong support system, including her family and medical professionals. Even as a college student, she said the support of being on a historically Black college campus buoyed her through health struggles.
She also cited her faith as a cornerstone of her strength. “My favorite Bible verse, Romans 8:28, reminds me that all things work together for good,” she said. “This belief has helped me stay positive despite the challenges.”
When McGill was diagnosed with the disease as a young person in 1957, it “wasn’t well known, and people knew very little about it,” she said. In fact, it was only in the 1940s when researcher Linus Pauling and his team discovered the causes of sickle cell anemia and its hereditary nature — both parents had to pass on the sickle cell gene for a person to inherit the disease.
KiTani P. Lemieux, Ph.D., an associate professor of pharmaceutical sciences at Xavier University of Louisiana, said that sickle cell disease is caused by a single-point mutation in the genes that hardens a person’s red blood cells, limiting oxygen circulation. It causes red blood cells to “get stuck in small blood vessels, leading to painful crises, inflammation and potential organ damage,” she said.
The disease most likely originated in sub-Saharan Africa, which may be why Black people are more likely to have it, compared to people in other racial groups. In regions where the tsetse fly carried a deadly parasite, the sickle cell trait evolved as a protective mechanism. The sickle-shaped red blood cells were less capable of transporting the parasite, thereby increasing the survival rate of individuals with this trait.
McGill has had to balance a number of treatments over the years to deal with her illness, including fluid management, pain management and, when needed, blood transfusions. She also has COPD, or chronic obstructive pulmonary disease, “congestive heart failure, pulmonary hypertension, all kinds of things that mess with my lungs,” she said. “So I’m on oxygen 24/7.”
McGill also attributes much of her longevity to her proactive approach to nutrition. “I don’t really drink, but I probably consume a gallon of water a day, which has helped tremendously,” she said. Her diet, she said, also plays a crucial role in her overall well-being. “When you put garbage in, you get garbage out,” she said.
According to Nutrition and Metabolic Insights, good nutrition can help manage sickle cell disease and maintain health by drinking more water, taking folic acid, eating healthy, consuming iron-rich foods and taking supplements.
Lemieux of Xavier University also underscored the importance of hydration, moderate exercise and following a diet low in red meat and rich in leafy green vegetables.
Intentional dietary choices and advocating for proper medical care are vital in managing this chronic condition. McGill stressed the importance of having an advocate who understands one’s medical history and can assertively advocate for proper care. In her case, her daughter is often by her side during treatments.
McGill highlighted the challenges people of color face in health care, in which pain may be minimized or taken less seriously.
“My point is speaking in a way that makes me the authority, which I am,” she said. “I’m the authority on this body.”
In March, McGill celebrated her 80th birthday with a party attended by 125 friends and family members. The event also served as a fundraiser for the Sickle Cell Association of Texas Marc Thomas Foundation, raising $16,000 to support children with sickle cell disease and their families.
“The theme of my birthday party was ‘It’s Possible,’” McGill said. “I wanted to show others that it is possible to live a full and rich life despite having sickle cell disease.”
Her advocacy also includes encouraging others with sickle cell disease to be open about their condition. “One thing I’ve learned over the years is that sickle cell patients often hide their illness,” she said. “I think that’s a big mistake. When people understand what you’re going through, they are more likely to offer productive help.”
Earlier this year, the FDA approved two new treatments for sickle cell, including a gene-editing system.
“However, the high cost of these treatments, ranging from $2 million to $3 million, creates a significant barrier to access,” Lemieux said. “It is crucial for patients to advocate for equitable access to these life-improving therapies.”
McGill, who said she is impressed with the potential impact gene therapy may have on people with the disease. “I’m excited about the progress being made,” she said. “It gives me hope for future generations.”
McGill shared a touching story from her 80th birthday gathering about a 5-year-old girl with sickle cell disease who underwent a groundbreaking gene therapy treatment involving stem cells from her sibling’s placenta. After months of intense chemotherapy and radiation, she is now in remission.
