Multiple sclerosis (MS) is a potentially disabling disease that affects the brain and spinal cord (central nervous system). It causes the immune system to attack a person’s myelin, the protective sheath that covers nerve fibers, resulting in communication problems between the brain and the rest of the body. Permanent damage or deterioration of the nerve fibers can occur because of the disease. Unfortunately, there is currently no cure for MS. However, treatments are available to assist with recovery from attacks, modify the disease’s course, and manage symptoms.
MS affects everyone differently depending on the location and severity of the nerve fiber damage in the central nervous system. Even though signs and symptoms of MS may vary from person to person, common symptoms include the following:
Although these are the common symptoms of MS, a person’s symptoms can improve, return, or change altogether. This is because most people with MS have a relapsing-remitting disease course meaning that they experience periods of new symptoms followed by “quiet periods” of remission that can last months or even years.
With this laundry list of common symptoms, diagnosing multiple sclerosis is a complex process. There is no blood test or single genetic marker to let a doctor know someone has MS. So, a diagnosis has to come by ruling out other potential diseases and using MRI scans to find brain, spinal cord, or optic nerve lesions.
Professionals previously thought MS primarily affected white people of European descent. However, recent studies show that the rate of Black Americans with multiple sclerosis is nearly even with white Americans and may affect Black people with a more aggressive progression and increased chance for disability. A Southern California study found that 226 Black people out of every 100,000 have MS—compared to 238 white people. Additionally, women are three times more likely to get MS than men.
Another reason there is not much information about Black people with MS is because of the underrepresentation of Black people in research studies. The lack of research makes it difficult for doctors and researchers to understand how MS impacts them individually and how to provide the best care. Black people living with MS are encouraged to participate in clinical trials or other kinds of research, such as the suggested link to help in the effort to improve care, diagnosis, and of course, a cure. (https://nms2cdn.azureedge.net/cmssite/nationalmssociety/media/msnationalfiles/brochures/brochure-participating-in-clinical-trials.pdf).
Even though there is no cure for MS, there are several different treatment options for people living with MS. Treatment typically focuses on speeding recovery from attacks, reducing new radiography and clinical relapses, slowing disease progression, and managing MS symptoms. Sometimes symptoms can be so mild that no treatment is necessary. There are more than 19 treatments to help people with MS, ranging from medications to infusions to physical therapy. A complete list of available treatments and what treatments are best suited for what needs is available at https://www.mayoclinic.org/diseases-conditions/multiple-sclerosis/diagnosis-treatment/drc-20350274.
As expected, there currently needs to be more blood and organ donors. Only about 2% of people in the United States donate blood resulting in around 13.6 million units of whole blood collected annually. Nearly 5,000 units of platelets and 6,500 units of plasma are needed daily in the United States. Red blood cell use is only good before 42 days, and platelets within five days. A constant supply is necessary to meet the demand. Blood varieties add an extra layer of difficulty. Maintaining diversity in the blood supply is essential to ensure every person receives the needed matching blood type, including rare types.
Donating blood requires the desire and ability to give, but organ donation is trickier. Every day there are around 107,000 people on the national organ waiting list; out of those 107,000, 17 people die daily waiting for a transplant. To make matters worse, transplant patients are increasing.
Even though the blood and organ donor shortage affects everybody, Black people feel the need the most. The sickle-cell disease primarily affects Black people, and many of those affected by the disease rely on frequent blood transfusions to manage its harmful impacts. Sickle cell affects 90,000 to 100,000 people in the U.S., most of whom are Black.
As with any blood work, people who need transfusions must have a compatible blood type with the donor. More Black people need to donate because one in three Black blood donors is a match for people with sickle cell disease. Therefore, the more Black people donate blood; the easier it will be for other Black people who need blood to access it without the stress of finding someone compatible.
Many Black people are hesitant about donating despite a glaring need. In 2016, Black people made up 30% of the organ donation waiting list and 33% of the kidney list, even though Black people only make up 13% of the U.S. population. These hesitancies to become a donor often result from a feeling that their organs may be unusable due to specific, prevalent ailments in the Black community and a general distrust of doctors, especially with their lives potentially being on the line.
Even though specific ailments may be present, a lot of the time, the organs are still acceptable for transplant. Education about organ donation would be beneficial to anyone who is considering becoming a donor. Other uncertainties have legitimate standing when looking at the history of Black people and healthcare. However, for those who feel uncomfortable becoming a donor at the end of their life, there is an option to be a living donor, which allows the donor to live a healthy life. Living donors can donate organs such as kidneys, segments of the liver, portions of the pancreas, and parts of the intestine. If a person chooses to be an organ donor, their donation can save up to eight lives.
