THE PROBLEM
A major deficit and problem in the black community is a lack of access to consistent healthcare, from diagnosis to treatment. In addition to lacking access, there is little to no support for the adjudication around the stigma of the American Black population and their vigilant mistrust of the American healthcare system.
I am advocating for increased visibility, access to education, shared stories, and equitable and consistent healthcare for African Americans living with MS.
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We need more
resources.
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We need more
black MS stories.
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We need more
visibility.
THE MISSION AND OBJECTIVE OF EMMS™ IS TO BE A DEDICATED RESOURCE FOR BLACK AMERICANS LIVING WITH MULTIPLE SCLEROSIS.
This platform seeks to be:
NO. 1
A living resource and space to curate more honest conversations with fellow MS Warriors and medical thought leaders, amplifying the existing resources that are in place for marginalized groups.
NO. 2
A catalyst to change the issues that have kept many black Americans from receiving a timely diagnosis for MS.
NEXT STEPS
OUR GOALS + PLAN OUR GOALS + PLAN OUR GOALS + PLAN
NO. 1
EXPOSE the lack of REPRESENTATION.
When you google MS Celebrities, it is evident that there is a lack of scientific data, representation, and narrative. This gives power to misinformation and conjecture.
How can we become the representation that is missing?
NO. 2
SHED LIGHT on the TRUTHS.
Showcase stories of Black MS Warriors as they traverse the territory where our experience is not represented.
NO. 3
EDUCATE. CURATE. CREATE.
Serve as a living resource, providing content and education specific to our community, amplifying the existing resources that are in place for marginalized groups.
Serve as a space to curate more honest conversations with fellow MS Warriors and medical thought leaders.
Create a database that tells us which stage, demographic, and physical location(s) our African American MS patients are currently in.
Build a national community that has mass media representation.
What is Multiple Sclerosis?
STATS + FACTS STATS + FACTS STATS + FACTS STATS + FACTS
Multiple Sclerosis is a long-term, chronic, unpredictable disease of the central nervous system which consists of the brain, spinal cord, and optic nerves. It is thought to be an autoimmune disease where the immune system attacks the person’s healthy tissues.
Multiple Sclerosis Early Symptoms:
Cognitive: Mental fatigue, blurred vision, slurred speech, paralysis.
Digestive: Incontinence, frequent urination, constipation, diarrhea.
Sensory: Burning, cramping, “pins and needles,” tingling, weakness.
Stability: Loss of balance, change in gait, “foot drop,” frequent stumbling.
Source: blackdoctor.org
DID YOU KNOW…
STATS + FACTS
THE MYTH THAT PEOPLE WHO ARE BLACK DO NOT GET MS IS JUST THAT—A MYTH.
In fact, studies suggest that MS can be equally or possibly even more common in the Black population, particularly in Black women.
MS can also be especially active in Black individuals, who are more likely to:
Experience more relapses and have worse recovery.
Experience greater disability.
Require ambulatory assistance earlier in the disease course.
Have more aggressive disease progression
Scientists don’t know the reasons for these differences yet. Black people are underrepresented in research, making it harder to find answers.
STATS + FACTS
MS IS DIFFERENT FOR BLACK AMERICANS.
Most people are not aware that there are distinct differences in how MS affects Black Americans versus white Americans. Numerous studies have found that Black Americans are at a high risk for disability, so early treatment intervention is even more critical.
However, studies suggest that Black people may respond differently than white people to some treatments, so it is important to work closely with your healthcare team to find the best treatment to help you manage your MS. It is not well understood whether immunological, socioeconomic, genetic, or environmental factors contribute to the more aggressive progression of MS in Black Americans, which also illustrates the need for ongoing research.
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transverse myelitis (inflammation of the spinal cord), which impacts the walking ability, and the need to use a cane sooner than white Americans
more visual symptoms
more frequent relapses and poorer recovery
more balance and coordination problems
faster transition from RRMS to SPMS
a rapidly disabling course of the disease
visual symptoms with thinning, or atrophy, of the inner retinas of the eyes, the structures responsible for vision
faster progression of tissue loss, or atrophy, of the CNS
“MS IS A VERY, VERY QUIET FIGHT, BECAUSE IT IS AN INVISIBLE DISABILITY.”
Azure A. Diagnosed in 2009.
GET INVOLVED.
JOIN THE EMMS NETWORK.
The EMMS™ Network endeavors to engage the undiagnosed, diagnosed, friends, family, general public, and medical industry about living and surviving Multiple Sclerosis as an African American.
We aim to host in-person media events where participants can engage in conversation, learn from medical experts, and meet peers either suffering from MS or their caretakers that assist those with MS.
READY TO MAKE A DIFFERENCE?
Together, we can bridge the MS healthcare gap and make a meaningful impact.
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Share our mission and stories with your friends, family, and network. Let's raise awareness together!
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Learn more about the realities of MS in the black community. Knowledge is power, and we're in this together.
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Share your story, connect with others, and be a part of our supportive MS community.