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About Black With MG
Our Mission
Myasthenia Gravis
Our Mission
At Black With MG, we strive to improve the lives of Black, Indigenous, and People of Color (BIPOC) living with myasthenia gravis and other autoimmune disorders by providing them with meaningful connections from shared lived experiences, education, access to resources and research opportunities. Our aim is to break the cycle of implicit b
At Black With MG, we strive to improve the lives of Black, Indigenous, and People of Color (BIPOC) living with myasthenia gravis and other autoimmune disorders by providing them with meaningful connections from shared lived experiences, education, access to resources and research opportunities. Our aim is to break the cycle of implicit bias and healthcare disparities, support minority owned businesses, encourage whole body health management, and be the listening ear that is so vitally needed.
Our History
Myasthenia Gravis
Our Mission
Founded April 18, 2014, by Dawn Warner online as the Myasthenia Gravis Minority Group after learning our demographic was specifically left out of a large clinical trial because they didn't think they could get enough minorities to participate. We are seeking to find what we have in common in the hopes of getting more clinical research w
Founded April 18, 2014, by Dawn Warner online as the Myasthenia Gravis Minority Group after learning our demographic was specifically left out of a large clinical trial because they didn't think they could get enough minorities to participate. We are seeking to find what we have in common in the hopes of getting more clinical research with Black and Brown participants. We are now an arm of the MG Holistic Society.
We recognize the unique needs in the BIPOC community and strive to provide social outlets for our BIPOC brothers and sisters to speak freely about living with myasthenia gravis and other autoimmune disorders. Donations made to us will help fund research. We are currently seeking sponsors and donors to help fund clinical research.
Myasthenia Gravis
Myasthenia Gravis
Myasthenia Gravis
Myasthenia Gravis (my-us-THEE-nee-uh GRAY-vis) is a rare chronic autoimmune neuromuscular disease that impacts the voluntary muscles. Myasthenia gravis is caused by an error in how nerve signals are sent to muscles. The communication between the nerve and muscle is interrupted at the neuromuscular junction causing the symptoms listed
Myasthenia Gravis (my-us-THEE-nee-uh GRAY-vis) is a rare chronic autoimmune neuromuscular disease that impacts the voluntary muscles. Myasthenia gravis is caused by an error in how nerve signals are sent to muscles. The communication between the nerve and muscle is interrupted at the neuromuscular junction causing the symptoms listed below. It most commonly impacts young adult women (under 40) and older men (over 60), but it can occur at any age, including childhood.
Common MG symptoms:
Fatigue
Blurred vision
Shortness of breath
Difficulty chewing
Difficulty walking
Difficulty smiling
Difficulty talking
Ptosis (Drooping eyes)
Double vision (diplopia)
Changes in facial expression
Impaired speech (dysarthria)
Difficulty Swallowing (leading to choking easily)
Muscle weakness in neck, arms, legs, hands or fingers
Support Black With MG Today
Understanding Health Disparities and Equity in Myasthenia Gravis
Understanding Health Disparities and Equity in Myasthenia Gravis
Understanding Health Disparities and Equity in Myasthenia Gravis
In the fight for health equity, it's essential to recognize the impact of racial disparities in healthcare. Black individuals with MG often face challenges rooted in systemic racism, medical bias, and socio-economic factors that affect access to diagnosis, care, and treatment. The following are some specific examples of the health inequities faced by Black MG patients:
Implicit Bias in Medical Care: Studies have shown that healthcare providers may unknowingly carry biases that influence the quality of care they provide to Black patients. Symptoms may be minimized, dismissed, or attributed to unrelated causes.
Underrepresentation in Research: Black people are often underrepresented in clinical trials, meaning treatments might not fully account for differences in genetics, disease progression, or treatment efficacy within the community.
Socioeconomic Barriers: Many Black individuals face financial challenges and insurance issues that prevent access to specialists, diagnostic tests, and cutting-edge treatments, which can lead to delayed or suboptimal care.
The Power of Sharing Lived Experiences
Understanding Health Disparities and Equity in Myasthenia Gravis
Understanding Health Disparities and Equity in Myasthenia Gravis
One of the most powerful tools we have is our collective voice. Sharing lived experiences as a Black person with MG fosters empathy and understanding within the healthcare system while empowering others who may be facing similar challenges.
Why Sharing Your Story Matters:
Breaking the Silence: Many in the Black community feel hesitant to discuss health issues, especially those involving rare conditions like MG. By speaking up, we break the cycle of silence, create awareness, and encourage others to seek early diagnosis and treatment. This could make a difference to you getting care sooner rather than later.
Educating Healthcare Providers: When doctors and healthcare professionals hear from Black patients directly, they are more likely to confront their own biases and approach care more thoughtfully.
Building Community and Support: By sharing your journey, you help others feel less alone, creating a sense of solidarity within the Black MG community.
Lived Experience Spotlight:
Marquette’s Journey with MG: After years of unexplained muscle weakness, Marquette a Black woman in her 40s, was finally diagnosed with MG after a persistent search for answers. Her story highlights the importance of self-advocacy and finding a doctor who listens.
Advocacy
Understanding Health Disparities and Equity in Myasthenia Gravis
Breaking the Silence: Overcoming Stigma and Speaking Up
Stay Informed: Keep up to date with the latest MG treatments, especially those that may have different effects based on your genetic background. Joining advocacy groups like the Myasthenia Gravis Foundation of America can help connect you to resources.
Culturally Competent Providers: Look for doctors and specialists who prioritize listening and respecting cultural differences. You have the right to change healthcare providers if you feel your needs are not being met.
Engage in Advocacy:
- Consider becoming an advocate within your community. By sharing your journey through blogs, local events, or even in church groups, you can raise awareness about MG while helping others feel comfortable discussing their own health struggles.
- You don’t have to be an expert to be an advocate—just telling your story is a powerful way to normalize conversations around MG and other chronic illnesses.
Resources to Help You Speak Up
- MG Support Groups for BIPOC: Connecting with people who share both your cultural background and health condition can provide a more comfortable environment for opening up. Look for local or national groups that focus on both MG and Black communities. Our meetings are the second Tuesday of the month at 7PM EDT.
What We’re Fighting For:
- Improved Access to Care: We advocate for policy changes that address the gaps in healthcare access, particularly for those in underserved communities.
- Culturally Competent Care: We are pushing for healthcare providers to receive better training on cultural competence to reduce bias and improve the quality of care for Black MG patients.
- Increased Representation in Research: It’s essential to encourage more Black participation in clinical trials and research to ensure treatments are effective across diverse populations
Breaking the Silence: Overcoming Stigma and Speaking Up
Healthy Living Tips for Black People with Myasthenia Gravis
Breaking the Silence: Overcoming Stigma and Speaking Up
In many Black communities, talking about health challenges—especially chronic or rare conditions like Myasthenia Gravis (MG)—can feel taboo. Cultural stigma, lack of awareness, and fear of being judged often prevent people from discussing their struggles openly. Breaking the silence is essential to empower individuals, raise awareness, and improve health outcomes for Black people living with MG.
The Impact of Silence in the Black Community
- Cultural Stigma: In some Black households, discussing health issues is seen as a private matter. There may be a fear of appearing "weak" or "burdening" others. This can lead to feelings of isolation and a reluctance to seek medical help.
- Mistrust in the Healthcare System: Historical mistreatment, such as the Tuskegee Syphilis Study, has led to a deep-seated mistrust of the medical system in Black communities. As a result, some individuals may delay seeking care or feel skeptical about their diagnoses.
- Lack of Awareness: Because MG is a rare condition, many people in the community—and even some healthcare providers—may not be familiar with it. This lack of knowledge can lead to delayed diagnoses or misinterpretation of symptoms, further silencing those who are suffering.
Why Breaking the Silence is Vital
- Early Diagnosis and Treatment: Speaking up about unusual symptoms like muscle weakness or fatigue can lead to earlier diagnosis of MG. Early treatment is crucial for better management of the disease and improving quality of life.
- Building Support Networks: Sharing your experience can help you find others going through similar struggles. Creating support networks within the Black community can foster understanding, compassion, and collective strength.
- Changing Perceptions: By openly discussing MG, we can change cultural perceptions around chronic illness. It shows that living with a condition like MG does not define a person’s strength, resilience, or value within the community.
Steps to Break the Silence
1. Start with Trusted Friends or Family:
- Begin by sharing your experience with someone close to you, like a friend or family member. This can help you build confidence in talking about your condition.
- Educate them about Myasthenia Gravis—what it is, how it affects you, and the importance of understanding your unique needs.
2. Leverage Social Media and Online Communities:
- The internet provides a platform where you can share your story anonymously or publicly. Consider joining MG support groups on platforms like Facebook or Twitter to connect with others and find a sense of community.
- Engage in discussions where you can learn from others and contribute your perspective, which can help demystify the condition for those unfamiliar with it.
3. Speak with Your Healthcare Provider:
- Have honest, open conversations with your doctor about how MG affects you, physically and emotionally. If you feel your concerns are not being heard, don’t hesitate to seek a second opinion or switch providers.
- Share your thoughts on the cultural and systemic barriers you face as a Black person navigating the healthcare system. This can help your doctor understand your full experience and offer better sup
Building a Future of Health Equity
Healthy Living Tips for Black People with Myasthenia Gravis
Healthy Living Tips for Black People with Myasthenia Gravis
Research Participation: Encourage Black patients to participate in clinical trials to ensure treatments are effective for all racial groups. Increasing representation in research will lead to more inclusive and tailored medical treatments.
- Policy Advocacy: Join or support groups working to influence healthcare policy, such as advocating for Medicaid expansions, better access to specialty care, and financial assistance for treatments.
- Mentorship and Support Groups: Connecting newly diagnosed MG patients with experienced individuals in the Black community can provide mentorship and support through what can be a daunting journey.
Counseling and Therapy: Speaking to a mental health professional, particularly one who understands the intersection of race and chronic illness, can help you process feelings of isolation or fear and provide strategies to communicate more openly about your health.
Faith-Based Support: For those who find strength in spirituality, church communities can offer an avenue for discussing health in a trusted, culturally familiar environment. Many churches are now embracing health ministries that focus on physical and emotional well-being.
Culturally Aligned Therapy: Seek out a therapist who is not only experienced in chronic illness but also understands the unique stressors that come with being Black in America. There are many Black therapists and support groups that can provide culturally relevant care.
Healthy Living Tips for Black People with Myasthenia Gravis
Healthy Living Tips for Black People with Myasthenia Gravis
Healthy Living Tips for Black People with Myasthenia Gravis
Managing MG involves a holistic approach to health that includes diet, mental well-being, exercise, and self-advocacy. Here are some expanded tips tailored to Black individuals living with MG:
1. Nutrition & Wellness
- Prioritize Nutrient-Dense Foods: Incorporating foods rich in vitamins and minerals is crucial for managing MG symptoms. Some African and Caribbean staples like beans, lentils, collard greens, and sweet potatoes are packed with essential nutrients that can help boost your immune system and energy levels.
- Omega-3 Fatty Acids: Found in fish like salmon, sardines, and mackerel, Omega-3s have anti-inflammatory properties that can reduce muscle fatigue and improve overall health.
- Herbs & Spices for Inflammation: Consider adding turmeric, ginger, garlic, and cinnamon to your meals. These traditional spices have been used in African and Black culture for their medicinal properties and can help manage inflammation.
Online Donations
Make a donation to help us fund microstudies for CBD oil, environmental exposure, burden of care, stress, allergies, and genetics. Your donations are also used to help fight the social determines of health.
Our Meetings
Join us the second Tuesday of the month. Online via Zoom. Register at info@mgholisticsociety.org
Black With MG
Hours
Today | Closed |
