Sickle Cell Matters Awareness Walk 2023, (Credit Clifton R. Kirkman II)
On Saturday, Sept. 14, the Sickle Cell Matters Awareness Walk returns to the Charles H. Wright Museum, rallying the community under this year’s theme, “Walking into a Brighter Future.” With the FDA recently approving three new disease-modifying medications and two gene therapy options, the event celebrates the significant progress in the fight against sickle cell disease (SCD). For over 50 years, the Sickle Cell Disease Association of America Michigan Chapter has been at the forefront of raising awareness and supporting families impacted by SCD, continuing its mission to educate and empower Detroit and its surrounding communities.
Despite great progress in medical care, only four medications are available that can change the course of certain diseases. Unfortunately, not enough people who could benefit from these medications are getting them. For those dealing with these diseases, the challenges go beyond just physical symptoms. Many patients say that their pain isn’t taken seriously, and some are unfairly thought to be seeking drugs.
According to the US Health and Human Services Office of Minority Health, individuals with sickle cell disease frequently experience longer wait times when seeking pain medication compared to patients with other illnesses, often due to factors like racial disparities and healthcare provider biases regarding pain management in this population.
People with sickle cell disease often experience severe pain, fatigue, and other health issues that can make their lives very challenging. Their average lifespan is nearly 30 years shorter than the general population’s.
In Michigan alone, approximately 4,000 individuals are living with sickle cell disease, part of the 100,000 affected nationwide. Despite the challenges, the fight continues, and it’s time for the medical community and society to rise significantly to meet the standard of care these brave individuals deserve.
Clifton R. Kirkman II, a Sickle Cell warrior, patient advocate, and journalist, is one of the 4,000 people living with this disease today. At the age of 37, he is thankful for hope and perseverance, which have helped him create balance in his life.
“I was diagnosed at 18 months with Hemoglobin SS.. My parents had the Sickle cell trait,”.Kirkman said.
“My mother didn’t know that she had the trait. When I was born, there was no newborn screening. The newborn screening did not consist of testing babies for sickle cell.”
Sickle Cell Disease (SCD) is a group of inherited red blood cell disorders. Usually, red blood cells are round and flexible, allowing them to move quickly through blood vessels. However, in individuals with SCD, these cells become rigid, sticky, and shaped like a crescent or sickle. The misshapen cells tend to get stuck in blood vessels, leading to severe pain, organ damage, and an increased risk of infections.
Clifton R. Kirkman II, Crystal Kirkman (Clifton’s daughter), Seconies Kirkman, (Clifton’s mother)
Sickle cell disease is caused by a gene change that affects the protein in red blood cells that carries oxygen throughout the body. When both parents carry this gene change, there is a 25% chance their child will have sickle cell disease. Approximately 100,000 people in the United States have this disease, and there are millions more around the world.
“I am noticing that pain episodes come more frequently now that I am getting older. Changing of the weather and seasons can induce a crisis. I must take extra precautions to prevent catching pneumonia or the stomach flu. Essentially, anything that’s a virus,” Kirkman explained.
The disease can cause problems in many parts of the body, including the lungs, heart, liver, and kidneys, and can even lead to a stroke. Because of these risks, managing sickle cell disease is very challenging and requires lifelong care.
According to the National Heart, Lung, and Blood Institute, Sickle cell disease (SCD) affects approximately 100,000 people in the U.S., and more than 90% of people with SCD are non-Hispanic Black or African American. While SCD can affect people from various ethnic backgrounds, it disproportionately impacts the African American community.
Approximately 1 in 13 African American babies are born with the sickle cell trait, and 1 in 365 are born with the disease. Unfortunately, individuals with SCD often face significant healthcare disparities, including delayed diagnosis, lack of access to specialized care, and inadequate pain management.
For a long time, sickle cell disease (SCD) hasn’t received as much attention and support as other genetic disorders such as cystic fibrosis. This has resulted in disparities in how these conditions are taken care of. Even today, individuals with SCD often struggle to receive proper treatment, particularly when it comes to managing their pain.
Sickle Cell Awareness Month provides an opportunity to reflect on the ongoing need for research, patient support, and education about the disease. Many advocacy groups, including the Sickle Cell Disease Association of America (SCDAA), host events throughout September to promote awareness, raise funds, and encourage blood donations, which are vital for individuals with SCD.
Kirkman was fortunate to have received unwavering and invaluable support from his younger sister while he was growing up.
“My sister, who is four years younger, always looked out and helped me. Whenever I was sick, she would take care of me. That has not changed today. She is now a nurse but has been my nurse before she got licensed to be an actual nurse,” Kirkman said.
Beyond medical advancements, raising awareness about the social and emotional impact of SCD is critical. The disease can take a toll not only on the patient but also on their families, affecting their quality of life, mental health, and financial stability. Support groups and mental health resources are essential in helping individuals and their families navigate the daily challenges of living with SCD.
While there is still much work to be done, the future for individuals with Sickle Cell Disease looks brighter than ever. With growing awareness, better treatment options, and an increasing focus on equitable healthcare, September serves as a vital reminder that progress is within reach. By continuing to highlight SCD during this month and beyond, we can work toward a world in which individuals with the disease receive the care, respect, and support they deserve.
“I’m looking forward to seeing new families because we’re all part of this community,” Kirkman said.
“I’m also looking forward to having more people this year come out. I’m looking forward to building more relationships with community leaders and community groups that will be there; though we’re located in Detroit, Sickle Cell Association of America, Michigan Chapter is for the entire state of Michigan.”
Sickle Cell Matters Awareness Walk
Saturday, Sept. 14 th, 2024, 9 a.m.
Charles Wright Museum
315 E Warren Ave, Detroit, MI 48201
To start a team, register, or donate go to: http://www.scdaami.org
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