Living with multiple sclerosis can be an isolating experience, but what happens when you feel even more invisible because of your community, culture or ethnicity? I am delighted to be speaking today with Natalie Diana Busari, the founder and CEO of The Nerve Of My Multiple Sclerosis CIC. Natalie is a patient advocate dedicated to addressing the challenges faced by Black people living with MS, particularly Black women and girls, who are often underrepresented and underserved in research.
Through her organization, Natalie is not only amplifying the voices of marginalized groups, but also creating much-needed resources to empower individuals and build a more inclusive MS community. Whether it’s advocating for better representation in research, sharing personal experiences to inspire others, or helping patients navigate the healthcare system, Natalie’s work supports many people in their everyday lives.
In this episode, we will explore her journey from diagnosis to advocacy, discuss the unique challenges faced by Black people with MS, and learn about the initiatives that Natalie’s organization is driving to create lasting change. If you are seeking a deeper understanding of the diversity within the MS community or are a patient looking for empowerment and support, this interview is for you.
Be inspired by Natalie’s story, her resilience and her vision for a future in which inclusion and equality are the norm in MS care.
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Table of Contents
Introduction - who is Natalie Diana Busari?
Natalie Diana Busari is the founder of „The Nerve Of My Multiple Sclerosis CIC.“ This organisation is dedicated to supporting and representing Black individuals living with multiple sclerosis, with a primary focus on Black women and girls.
Fun Fact: Natalie is passionate about design and enjoys drawing in her spare time. She also has a background in web design and development, which continues to influence her work today.
Personal and Professional Journey
What inspired you to become an advocate for MS, especially focusing on the black community?
Natalie’s journey into advocacy was born out of a personal experience of feeling invisible in the MS community. After her diagnosis, she struggled to find representation and support from organisations that reflected her identity. This led her to advocate for herself initially, pushing against the barriers she faced. As she began to connect with other Black individuals living with MS online, she realised there was a collective need to increase visibility and break the stigma surrounding the disease. This revelation sparked her commitment to amplify the voices of Black people with MS and create a platform where their experiences could be shared and validated.
Can you share some of the key challenges you faced on your journey as an MS advocate, and how they shaped your mission today?
One of the most significant challenges Natalie faced was the perceived indifference from larger organisations that claimed to support marginalized groups but often failed to engage meaningfully. Also the fact that activities to include Black individuals in MS spaces and narratives were seen as separation fact it is all about inclusion. She encountered instances of unkindness from medical professionals while advocating for patients, which not only discouraged her but also reinforced the need for a dedicated space where Black individuals could feel safe and respected. Working with medical professionals who showed empathy and understood the unique experiences of black patients needing fair access to medical care. Additionally, she recognised that many within the Black community were reluctant to speak out about their experiences due to feelings of shame or isolation. This understanding shaped her mission to create an inclusive environment where everyone feels empowered to share their stories and seek support.
What motivated you to establish "The Nerve Of My Multiple Sclerosis CIC," and what are the main goals of your organization?
Natalie established „The Nerve Of My Multiple Sclerosis CIC“ to fill a gap she experienced during her own diagnosis—specifically, the lack of resources tailored for Black individuals living with MS. Initially focused on providing support within the UK, she has since expanded the organisation’s goals to include international outreach, now supporting individuals in Ghana and Nigeria as well. The central aim is to create a global network that not only offers resources and support but also raises awareness about the unique challenges faced by Black individuals with MS. By collaborating with medical professionals and researchers, the organisation strives to ensure that Black voices are included in MS research and that their specific health needs are addressed.
Health Inequalities and Representation
Why do you think black individuals with MS are often underrepresented in MS research and clinical trials?x
Natalie believes that systemic neglect plays a critical role in the underrepresentation of Black individuals in MS research. Many medical professionals are not equipped with the knowledge or resources to actively engage Black patients inand healthcare institutions, often stemming from past injustices in medical treatment and research practices. This mistrust makes it even more challenging to recruit participants from these communities into clinical trials. research opportunities. This can lead to a cycle of neglect where the voices of Black individuals are not heard or valued. Additionally, there is a historical mistrust between the Black community and healthcare institutions, often stemming from past injustices in medical treatment and research practices. This mistrust makes it even more challenging to recruit participants from these communities into clinical trials.
What unique challenges do black individuals face in the MS space, both in terms of diagnosis and ongoing care?
Black individuals living with MS face several unique challenges, including a lack of awareness about the disease within their communities. This often leads to delayed diagnoses or misdiagnoses. Furthermore, they may encounter limited support from family or friends who do not understand the condition, leading to feelings of isolation. Natalie emphasises that without a robust support system, many individuals feel they cannot openly discuss their experiences or seek help, which exacerbates their struggles with both mental health and disease management.
How do health inequalities impact the black MS community specifically, and what can be done to address these disparities?
Health inequalities significantly impact the Black MS community by creating barriers to accessing appropriate care and support. Natalie advocates for open dialogue within the community about MS to encourage more individuals to seek help. It is essential for healthcare providers to actively reach out to Black patients, demonstrating genuine care and understanding of their unique experiences. By fostering these relationships and building trust, healthcare systems can begin to address these disparities effectively.
Impact of the Patient Organisation and Advocacy Work
What initiatives or programs does your patient organization offer to support black people living with MS?
While still solidifying its programmes, „The Nerve Of My Multiple Sclerosis CIC“ currently offers community events that facilitate open conversations about living with MS. These events allow individuals to share their experiences in a supportive environment. The organisation also conducts workshops and masterclasses focused on educating attendees about navigating healthcare systems, understanding their rights as patients, and advocating for their needs effectively. Natalie emphasises that these initiatives are designed not only to inform but also to empower participants to take charge of their health journeys.
How do you see your organization contributing to a more inclusive healthcare system for people with MS from diverse backgrounds?x
Natalie’s organisation aims to build bridges between the medical community and patients by encouraging healthcare providers to listen to and understand the unique experiences of Black patients with MS. By collaborating with medical professionals and researchers, they work together to identify gaps in care and address them. This approach ensures that diverse voices are represented in discussions about treatment and policy changes affecting people with MS.
Can you share some success stories or feedback you've received from the black MS community that highlight the impact of your work?
One particularly moving success story involved a participant at one of Natalie’s community events who broke down in tears after seeing Natalie’s family join her on stage. This individual had not disclosed her diagnosis to her family for four years due to fear of judgement. Inspired by the supportive atmosphere, she found the courage to finally share her truth with her loved ones. Additionally, several attendees have started their own social media channels to share their journeys, contributing to a growing online community that fosters connection and understanding.
Bridging the Gap in MS Research and Clinical Trials
How can the healthcare industry and researchers improve recruitment and representation of black individuals in MS clinical trials?
To improve recruitment, healthcare providers must make a concerted effort to reach out directly to Black communities through targeted outreach initiatives. This includes attending community events, partnering with local organisations, and utilising culturally relevant messaging that resonates with potential participants. Natalie stresses that it is essential for researchers to engage in conversations about why participation is crucial while addressing any concerns or misconceptions that may deter individuals from participating in clinical trials.
What role does your organization play in encouraging black MS patients to participate in research, and how do you address any concerns they may have?
„The Nerve Of My Multiple Sclerosis CIC“ plays a vital role by educating patients on the importance of diverse representation in research. They provide clear information about what participating in research entails and how it can lead to better outcomes for their community. By fostering open discussions around research participation, they aim to alleviate fears and build trust between researchers and potential participants.
In your view, how important is it to have diverse representation in MS research, and what impact does it have on treatment outcomes?
Diverse representation is crucial for understanding how multiple sclerosis affects different populations. Natalie argues that without this diversity, we risk overlooking significant differences in how MS manifests across ethnicities and backgrounds. For effective treatment development, it is imperative that research includes data from various demographic groups so that all patients receive appropriate care tailored to their specific needs.
Empowerment and Awareness
How does "The Nerve Of My Multiple Sclerosis CIC" empower individuals in the black MS community, and what resources do you provide to help them advocate for their needs?
The organisation empowers individuals by providing resources that focus on self-advocacy and education about navigating healthcare systems. They offer workshops designed to equip participants with knowledge about their rights as patients, how to communicate effectively with healthcare providers, and what questions they should be asking regarding their treatment options. Natalie believes that by educating individuals about their health and rights, they can take control of their health journey.
What advice would you give to MS patients, particularly those from underrepresented backgrounds, on advocating for their own health and navigating healthcare systems?
Natalie advises MS patients from underrepresented backgrounds to actively advocate for their health by seeking out supportive communities where they feel seen and heard. She encourages them not to hesitate when voicing concerns or questions during medical appointments. Finding a healthcare professional who listens and respects their experiences is critical for effective care.
What message would you like to share with the broader MS community about the importance of inclusivity and support for all individuals affected by the disease?
Inclusivity is paramount; everyone affected by multiple sclerosis deserves support and representation, regardless of their background. Natalie stresses that it is essential for all voices, especially those from marginalised communities, to be heard in discussions about living with MS so that no one feels alone in their journey.
Quickfire Q&A Session
Complete the sentence: "For me, multiple sclerosis is...."
„For me, multiple sclerosis is a horrible disease that attacks one’s own body, turning my immune system against me in ways I never thought possible.“
Which website can you recommend for people living with MS?
Natalie recommends visiting websites like MS Together or the MS Society for reliable information on resources and support available for those living with multiple sclerosis.
What development would you like to see in the field of multiple sclerosis in the next 5 years?
She hopes for more comprehensive discussions surrounding diversity in multiple sclerosis research so that we can fully understand how it affects all populations—not just those typically represented in studies.
Farewell
Finally, what message of hope or encouragement would you like to share with individuals living with MS?
To individuals living with MS: remember that there is life beyond diagnosis. You are not alone; there is a supportive community ready to help you navigate this journey.
How and where can interested people find you online?
You can find Natalie online through „The Nerve Of My Multiple Sclerosis.“ Stay tuned for updates as they are currently working on enhancing their online presence! But in the mean time you can type “the nerve of my ms on most social media platforms and we will be there.
Thank you for tuning in!
It’s fantastic and very much needed to have people like Natalie around to raise awareness for underrepresented groups of MS patients. And I’m sure that she will keep on making a difference.
See you soon and try to make the best out of your life,
Nele
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