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MS VOICES Resources

Lupus: Hard to Diagnose, Disproportionately Affects Black Women, but Fairly Little Known in the Community

Lupus: Hard to Diagnose, Disproportionately Affects Black Women, but Fairly Little Known in the Community

Lupus is a disease that affects people of all races and ethnic groups. The Lupus Foundation of America estimates that 1.5 million Americans have some form of lupus. Of those that are living with lupus, 90% of them are women. Furthermore, lupus is three times more prevalent in Black women than Caucasian women; 1 in 250 Black women will develop lupus.

Even though lupus is a disease that disproportionately affects Black women and other people of color, most people know little to nothing about it. A 2012 Lupus Awareness Survey found that 61% of Americans said they knew little or nothing about the disease; specifically, 57% of Black people said they had never heard of lupus or knew little about it.

So, what is lupus?

Lupus is a chronic autoimmune disease affecting any part of the body. The condition makes the immune system unable to tell the difference between healthy tissue and foreign bacteria, germs, and viruses, causing the immune system to attack healthy tissue and cause inflammation. The cause of lupus is unknown, but dozens of known genetic variants impact who gets lupus and how severe it is. Lupus is hereditary/genetic and is not contagious.

There are four different types of lupus:

  • Systemic Lupus (SLE) is the most prevalent form of lupus, accounting for more than 70% of all cases. It can affect all body parts, including skin, joints, heart, lungs, kidneys, liver, brain, or blood.
  • Drug-Induced Lupus is caused by taking certain types of medicines, and it typically goes away when the patient stops taking the medication. Symptoms can be similar to systemic lupus.
  • Cutaneous (Discoid) Lupus affects only the skin, typically in the form of rashes. It accounts for about 10% of all lupus cases.
  • Neonatal Lupus is a rare condition where the mother’s antibodies affect the fetus. It can cause the baby to experience symptoms that range from a rash that goes away to a permanent heart defect.

Since lupus can affect any part of the body and impacts everyone differently, there are many symptoms. The most common symptoms are facial “butterfly” rashes, sores in the nose or mouth, joint pain and swelling, fatigue, feverish feeling, unusual hair loss, memory problems, and blood complications.

Lupus can be difficult to diagnose because its varying symptoms are similar to many other illnesses, and lupus symptoms can be unclear, come and go, or change. Because of the difficulty of diagnosis, on average, it takes about six years from the time people first notice their symptoms to being correctly diagnosed with lupus. Sixty-three percent of people with lupus reported being incorrectly diagnosed, and 55% reported seeing four or more different healthcare providers before being accurately diagnosed.
To diagnose lupus, doctors use a list of eleven criteria, symptoms, and laboratory test results, to help determine whether a patient has lupus. A patient must have at least four criteria to be diagnosed. They do not have to have all four criteria simultaneously but must let their doctor know about any previous tests or symptoms.

If you have been diagnosed with lupus, there are various resources to help you financially and medically, for the disease can be costly. The average annual direct healthcare cost of a person with lupus is $33,223. Visit https://www.lupus.org/care-support/programs-and-services to find programs and services for local and national support.

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MS VOICES Resources

Multiple Sclerosis Fluctuates in Intensity, Has No Cure, but Treatment Options Provide Relief

Multiple Sclerosis Fluctuates in Intensity, Has No Cure, but Treatment Options Provide Relief

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: 

  • Numbness or weakness in one or more limbs, usually on one side of the body at a time
  • Tingling
  • Electric-shock sensations occur with neck movements, especially bending the neck forward
  • Lack of coordination
  • Unsteady posture or inability to walk
  • Impaired vision, including partial or complete loss of vision (typically in one eye at a time), pain during eye movement, prolonged double vision, and blurry vision
  • Vertigo
  • Sexual, bladder, and bowel function problems
  • Fatigue
  • Slurred speech
  • Mood disturbances

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.

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Medicaid and CHIP Toolkit

Medicaid and CHIP Toolkit

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HB 770 Fact Sheet

HB 770 Fact Sheet

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Equal Pay Toolkit

Equal Pay Toolkit

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Equal Pay EEOC Handout

Equal Pay EEOC Handout

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Journey to Ground Zero of the US Abortion Battle

Journey to Ground Zero of the US Abortion Battle

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MS VOICES Resources

The Dermatology of Black People: Our Skin, Our Hair, Our History

The Dermatology of Black People: Our Skin, Our Hair, Our History

Being Black comes with a unique hair and skin routine for each person. To some, the amount of time and money spent on products may seem excessive, but for Black people, it makes them who they are and is a critical part of their identity. Hair and skin should not define people, but many have been treated poorly just for holding their heads high as they proudly wear their hair exactly how it grows from their scalp. 

Black hair is different from the strands of any other race. Each coil comes in varying degrees of curl density ranging in a various number of different classifications. Black hair tends to grow up or out due to most curls instead of straight down like many others. The intricate growth pattern provides several styles—natural, straight, braids, locs, short dos, long dos, weaves, or extensions. The options are limitless. 

Even though Black hair is versatile, it has not always been seen as “professional” or “acceptable” in its natural state in specific settings like the workplace and school. Previous generations, especially women, had to straighten their hair and avoid certain styles to get and keep their jobs. According to Dove, 63% of Black adults have faced hair discrimination, and 25% of Black adults have faced discipline or been sent home from work because of their hairstyle. 

Thankfully, the CROWN (Create a Respectful and Open World for Natural Hair) Act was passed through Congress in 2022. The Act prohibits denying employment and educational opportunities based on hair texture, “including hair that is tightly coiled or tightly curled, afros, and protective styles, including braids, locs, twists, or Bantu knots.” With that language, the CROWN Act serves as a deterrent to racial biases in education and employment opportunities. It allows Black people and other people of color to be themselves. 

Black skin care can be just as particular as haircare and, of course, has also come with many apparent biases and racism. Keeping minority skin moisturized, hydrated, and healthy should be the biggest concern. However, how much or how little melanin (pigmentation) a person has is commonly the focus. Blatant and disguised racism continues to be a problem between races, but there is also the issue of colorism within different cultures. Racism and colorism, the prejudice or discrimination against individuals with a dark skin tone, usually within the same ethnic or racial group, has contributed to many darker-hued people using bleach creams and treatments to lighten their complexion. 

Desiring marriage, social standing, or employment when it seems like having darker skin has held you back causes people to take drastic measures. According to an article by CNN World, the global market for skin whitening was estimated at $8 billion in 2020. Women account for almost 80% of sales worldwide. These creams dominate the market and are estimated to reach $6.6 billion by 2027. Skin whitening products can be toxic and cause life-threatening ailments, but how you feel about your skin can contribute to how you care for it. 

In terms of healthy skincare, once you figure out your uniqueness, dry, oily, light, dark, or a combination, you can start a customized regimen. Of course, the top layer of darker skin contains more melanin than other races, which contributes to certain genetic factors that cause specific skin conditions, particularly in Black people. 

Some of the most common are:

Eczema: Black people are more prone to severe cases of eczema. Eczema rashes can appear darker brown, purple, or gray instead of red.

Keloids and Hypertrophic Scars: Black skin may contain gene mutations that increase the expression of fibroblasts in scar tissue used to create collagen. This excess collagen makes skin more vulnerable to scar-like formations.

Melasma: Melasma primarily affects women and causes dark patches, generally on the face. It can be triggered by pregnancy, birth control, hormone therapy, sun exposure, or skin irritation.

Hyperpigmentation: Hyperpigmentation causes darker patches or spots to develop on the skin. It can come from atopic dermatitis, bug bites, inflammation, and psoriasis. 

All races have issues that are more prone to each skin type. When seeking self-care, whether it be your skin or hair, it is essential to do what is best for you. Use products you trust and are tailored to you. Always test a new cream or ointment on a small skin area to monitor reactions. If you need help finding what works for you or notice something wrong with your skin or hair, don’t hesitate to consult your doctor / dermatologist.

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MS VOICES Resources

Doctors Should Listen and Adhere, Not Instruct and Ignore

Doctors Should Listen and Adhere, Not Instruct and Ignore

Trust is not given.  It is earned. For too many Black women, a sense of confidence in care is not there with their doctors, someone you should trust has your best interest. However, for many Black women, that trust isn’t there; they feel like they’re not being listened to about their healthcare.

To understand why it’s hard for Black women to trust that doctors and others in healthcare are listening to them, we must look back at the history of healthcare—a history overladen with the mistreatment of Black women. Over the course of history, healthcare professionals have been complicit in supporting the fictional biological concept of race being a justification for the abuse and enslavement of Black people. These falsities also led to the propagation of racial categorizations in healthcare, suggesting connotations such as Black people having a higher pain tolerance. 

James Sims was one of those healthcare professional tragedies. Sims was hailed as the “Father of Gynecology” and is still praised for his discoveries about the female reproductive system, despite his inhumanely inspecting Black women’s bodies without their consent. The stories of the operations that Sims performed are horrendous. Adding in the fact that he refused to use anesthesia because of racial categorization exponentially intensifies the unimaginable pain those 12 women endured. The contributions to modern medicine by Sims and many others continue to spread without mentioning the system used to get the research or notice of the racial biases that their work relied on and continues to perpetuate.  

  • A 2016 study found that almost half of first- and second-year medical students believed Black people had thicker skin and had a higher pain tolerance than white people.
  • A 2019 American Journal of Emergency Medicine study found that Black patients were 40% less likely to receive medication for acute pain than white people and 34% less likely to be prescribed opioids.
  • The Department of Health found that a Black woman with a college degree is more than twice as likely to experience severe childbirth complications than a white woman who has not finished high school.  This finding puts to bed the notion that quality of care relies upon socioeconomic status. 

It does not help that representation of Black doctors is minuscule. Only 5.3% of practicing physicians in the U.S. are Black and Black women make up 3% of that small group. Most people find it hard to trust doctors, especially those who don’t look like them. When patients of color experience poor bedside manners and mediocre to subpar care, it can ultimately result in them not going to the doctor. These poor conditions contribute to women of color having the highest maternal mortality rates, their children having the highest infant mortality rates, and the highest numbers and deaths from other health issues such as cancer, hypertension, and heart disease.  

Whether you have experienced unequal treatment in the healthcare system or not, here are some things you can do to further advocate for your health at the doctor’s office, according to The Lily, a product of the Washington Post: 

  • Learn the basics of your healthcare: know what screenings and procedures are needed and at what age.
  • Know your normal: only you know how you feel daily, so know your normal to know when something is off. 
  • Don’t ignore pain.
  • Find an excellent primary care doctor: having a primary care doctor you can trust with all your health concerns is essential. Keep looking until you find one that you’re comfortable with. There are resources such as the Association of Black Women Physicians, White Coats for Black Lives, and Health in Her Hue to help you find the right doctor for you.  



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Closing Healthcare Facilities in Rural Mississippi Makes a Bad Situation Worse

Closing Healthcare Facilities in Rural Mississippi Makes a Bad Situation Worse

“We have a healthcare crisis in this state,” said Dr. Daniel P. Edney, Mississippi’s State Health Officer.

Dr. Edney made these comments following the closure of a Greenville hospital’s neonatal intensive care unit and, more recently, the decrease of Greenwood-Leflore hospital’s labor and delivery services. These Mississippi hospitals’ struggles highlight the difficulty of finding and sustaining adequate healthcare in rural areas. Unfortunately, the healthcare crisis in rural areas in Mississippi is not just a Magnolia state problem. It’s a nationwide dilemma.

Nationwide, 14 % of the population, about 46 million people, live in rural communities. However, rural communities account for about two-thirds of primary care health professional shortage areas. The Kaiser Family Foundation estimated that nearly 15,000 additional healthcare providers are needed to eliminate the shortage. There are also logistical challenges to accessing care, as a 2018 report found the average time to drive to a hospital was 65 % longer in rural areas than in urban communities. A shortage of providers and difficulty getting to providers forces many people living in rural communities to seek healthcare in emergencies instead of making regular visits and seeking preventative care.

Financial barriers, scopes of practice, and the rural setting itself all serve as factors that restrict rural communities access to quality healthcare. Making healthcare more accessible in rural areas improves healthcare as costs dwindle by providing people with preventative healthcare solutions.

Financial constraints play a fundamental role in the current healthcare shortage in rural areas. In 2021, the medical school graduate debt was $203,062, and in 2020, the average dental school graduate debt was $304,824. The high costs of medical school limit who will apply, and the debt accrued from going through medical school can force physicians to pursue higher salaries more available in dense, urban areas.

Advanced practice registered nurses (APRNs) and physician assistants (PAs) are vital cogs in the healthcare system that can provide care for patients. States have different rules about whether APRNs and PAs can practice independently and what medications they can prescribe. Despite APRNs and PAs not being registered physicians, a 2018 study found no statistical difference in outcomes in rural areas when states expensed scopes of practice for nurse practitioners.

The low population density of rural areas makes traditional healthcare unsustainable as they may need to see more patients to cover their costs. Non-traditional forms of healthcare, such as telemedicine and mobile clinics, could fill the void. Forty-three states and Washington D.C. have telemedicine coverage requirements for private health insurers, but less than half of those states mandate equal reimbursement for telemedicine services or telemedicine parity.
The method used for services can result in unequal reimbursement for similar services. This leads to increased costs, especially for those living in rural communities. Enacting telemedicine parity regulations for Medicaid and private insurers would lessen the financial burden for rural communities, making the platform more accessible for those who need it most.

Mobile clinics, vehicles that provide prevention and healthcare services, have proven their value to healthcare. For example, the Family Van, a Massachusetts mobile clinic, estimates that from January 2010 to June 2012, they helped patients avoid nearly 3,000 emergency room visits resulting in statewide savings of about $1.4 million. However, clinics primarily rely on third-party funding to cover their costs resulting in 58 % reporting a lack of financial capacity as the most significant obstacle they face.

Everyone should have equal access to healthcare. However, that is not a reality for most people currently living in rural communities. That is not to say that something cannot be done about it, as solutions such as alleviating the financial concerns of medical professionals, expanding scopes of practice, and investigating non-traditional healthcare methods are available. Like everything, these solutions cost money, but the long-term benefit will save the healthcare industry millions in costs associated with hospital visits.