When Patricia McGill was 13 and learning that she had inherited sickle cell disease, she did not think she would reach 30.<\/p>\n\n\n\n
But now she and her family are celebrating McGill\u2019s 80th year. <\/p>\n\n\n\n
McGill is one of the nation\u2019s oldest people with sickle cell disease, living decades past age 52, the life expectancy of someone with the disease<\/a>, which has a disproportionate effect on Black people. <\/p>\n\n\n\n Born and raised in Houston, McGill was diagnosed with sickle cell disease after years of mysterious illnesses. \u201cI was sick a lot, and when I did get sick, it was more serious than if my siblings got the same illness,\u201d McGill said.<\/p>\n\n\n\n Despite her condition, McGill was determined to live life fully. In the 1970s, according to Public Health Reports<\/a>, life expectancy for people with sickle cell disease was less than 20 years. <\/p>\n\n\n\n \u201cI decided that if I might only live to about 30, which is what I initially thought, I would do everything I wanted to do,\u201d she said.<\/p>\n\n\n\n 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. <\/p>\n\n\n\n Still, McGill accomplished two of her goals \u2014 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.<\/p>\n\n\n\n McGill has orthographic dyslexia, a learning disability that affects her ability to spell. Her children also have learning disabilities, she said. <\/p>\n\n\n\n \u201cI knew there were others like us who needed support and understanding,\u201d McGill said.<\/p>\n\n\n\n \u201cI knew there were others like us who needed support and understanding,\u201d McGill said. <\/p>\n\n\n\n Her commitment to her students extended beyond academics. \u201cI always made it a point to show them that they were not alone and that they could overcome their challenges,\u201d 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.<\/p>\n\n\n\n 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.<\/p>\n\n\n\n She also cited her faith as a cornerstone of her strength. \u201cMy favorite Bible verse,\u2002Romans 8:28<\/a>, reminds me that all things work together for good,\u201d she said. \u201cThis belief has helped me stay positive despite the challenges.\u201d<\/p>\n\n\n\n When McGill was diagnosed with the disease as a young person in 1957, it \u201cwasn\u2019t well known, and people knew very little about it,\u201d she said. In fact, it was only in the 1940s when researcher Linus Pauling<\/a> and his team discovered the causes of sickle cell anemia and its hereditary nature \u2014 both parents had to pass on the sickle cell gene for a person to inherit the disease. <\/p>\n\n\n\n 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\u2019s red blood cells, limiting oxygen circulation. It causes red blood cells to \u201cget stuck in small blood vessels, leading to painful crises, inflammation and potential organ damage,\u201d she said.<\/p>\n\n\n\n The disease most likely originated in sub-Saharan Africa<\/a>, 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.<\/p>\n\n\n\n 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, \u201ccongestive heart failure, pulmonary hypertension, all kinds of things that mess with my lungs,\u201d she said. \u201cSo I\u2019m on oxygen 24\/7.\u201d <\/p>\n\n\n\n McGill also attributes much of her longevity to her proactive approach to nutrition. \u201cI don\u2019t really drink, but I probably consume a gallon of water a day, which has helped tremendously,\u201d she said. Her diet, she said, also plays a crucial role in her overall well-being. \u201cWhen you put garbage in, you get garbage out,\u201d she said.<\/p>\n\n\n\n According to Nutrition and Metabolic Insights<\/a>, 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. <\/p>\n\n\n\n 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. <\/p>\n\n\n\n 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\u2019s medical history and can assertively advocate for proper care. In her case, her daughter is often by her side during treatments. <\/p>\n\n\n\n McGill highlighted the challenges people of color face in health care, in which pain may be minimized or taken less seriously<\/a>. <\/p>\n\n\n\n \u201cMy point is speaking in a way that makes me the authority, which I am,\u201d she said. \u201cI\u2019m the authority on this body.\u201d<\/p>\n\n\n\n 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. <\/p>\n\n\n\n \u201cThe theme of my birthday party was \u2018It\u2019s Possible,\u2019\u201d McGill said. \u201cI wanted to show others that it is possible to live a full and rich life despite having sickle cell disease.\u201d<\/p>\n\n\n\n Her advocacy also includes encouraging others with sickle cell disease to be open about their condition. \u201cOne thing I\u2019ve learned over the years is that sickle cell patients often hide their illness,\u201d she said. \u201cI think that\u2019s a big mistake. When people understand what you\u2019re going through, they are more likely to offer productive help.\u201d<\/p>\n\n\n\n Earlier this year, the FDA approved two new treatments for sickle cell, including a gene-editing system. <\/p>\n\n\n\n \u201cHowever, the high cost of these treatments, ranging from $2 million to $3 million, creates a significant barrier to access,\u201d Lemieux said. \u201cIt is crucial for patients to advocate for equitable access to these life-improving therapies.\u201d<\/p>\n\n\n\n McGill, who said she is impressed with the potential impact gene therapy may have on people with the disease. \u201cI\u2019m excited about the progress being made,\u201d she said. \u201cIt gives me hope for future generations.\u201d<\/p>\n\n\n\n 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<\/a> treatment involving stem cells from her sibling\u2019s placenta. After months of intense chemotherapy and radiation, she is now in remission.<\/p>\n\n\n\n