World MS day - May 30 2025

THE NERVE OF MY MULTIPLE SCLEROIS CIC

HIGHLAND HOUSE, 165 THE BROADWAY

WIMBLEDON, SW19 1NE

The Nerve of My Multiple Sclerosis: Reflections on MS Diagnosis

A World MS Day 2025 Special – Date Edited 27th May 2025

Through my experience as the founder of a nonprofit patient organisation that supports, advocates for, and empowers Black individuals living with multiple sclerosis and other similar neurological conditions, I have become deeply aware of the significant challenges faced by people of Black heritage in obtaining timely and accurate MS diagnoses.

We have conducted a global survey targeting people of Black heritage worldwide, aiming to understand how early signs and symptoms of MS are experienced across different regions—whether in Western developed countries, developing nations, or other areas. While we eagerly anticipate reviewing the full results soon, emerging patterns strongly suggest that Black communities are consistently left behind when it comes to diagnosis and awareness.

This is especially concerning given what research is revealing about smouldering MS—a form of the disease marked by ongoing, low-level progression that often occurs without clear symptoms or relapses.

Recognising these subtle early signs is critical to preventing irreversible damage, but in many Black heritage communities, these signs are frequently missed due to a lack of awareness and culturally appropriate

healthcare.

In Western countries, diagnostic delays often mean individuals only receive a diagnosis once their symptoms have significantly worsened, missing crucial opportunities for early treatment. However, in African and

Caribbean countries, these delays can extend for years. An example of this is highlighted in Dr Fiifi’s presentation from the Ghanaian MS registry, which reports that patients had to wait longer than two years for a diagnosis— and those figures only reflect patients who could afford to pay for medical bills.

The barriers contributing to these delays include systemic inequalities in healthcare access, socioeconomic factors, and insufficient research focused on Black populations.

Our organisation has taken it upon ourselves to drive this research forward by advocating within MS communities both abroad and locally in the UK.

We engage directly with Black heritage patients, listening carefully to their stories and pain points to gain their trust. This trust enables individuals to share their experiences openly through our surveys. So far, we have

conducted two insightful surveys and look forward to sharing the latest results soon—we are currently waiting for a few more responses before releasing them.

We are working hard to find answers and drive real change in how MS diagnosis and care is approached for Black heritage communities across the global.

Natalie Diana Busari – Founder, The Nerve of My Multiple Sclerosis CIC

The Registrar of Companies for England and Wales, hereby certifies that THE NERVE OF MY MULTIPLE SCLEROSIS CIC
registered company no: 14261409 is incorporated under the Companies Act 2006 as a Community Interest Company; is a
private company, that the company is limited by guarantee, and the situation of registered office is in England and Wales.

My MS Diagnosis: A Turning Point – A Dual Perspective

Dr. Meral Seferoğlu, a neurologist at Bursa Yüksek İhtisas Training and Research Hospital, Türkiye, and MS patients share their insights on the profound impact of MS diagnosis.

This year’s World MS Day theme, “Diagnosis,” aptly captures the multifaceted nature of receiving an MS diagnosis. As Dr. Meral Seferoğlu eloquently states, it's not merely a medical process but a profound psychosocial journey. For neurologists like her, each diagnosis represents a turning point, not just for the disease, but for an entire life. This sentiment resonates deeply, transforming the diagnosis from a clinical label into a shift in identity, often unveiling long-standing uncertainties. These uncertainties can evoke a wide range of emotions in patients—fear, denial, and sometimes even relief. Consequently, making a diagnosis demands more than just clinical findings; it requires empathy, strong communication skills, and cultural sensitivity, all as vital as medical knowledge itself.

The emotional landscape of diagnosis is profoundly personal. A patient (Mücahit Can) being followed at Bursa MS center shared his initial reaction: "When I first learned that I had MS, I didn’t want anyone to know about my illness. People wouldn’t know what it was, they might ask strange questions, or they wouldn’t believe me when they saw my condition. I didn’t want anyone’s pity or sympathy. I thought about how my family would treat me and how much they would worry. So I generally kept it to myself." This powerful sentiment underscores the deep-seated fears of stigma and misunderstanding that many individuals face, highlighting the critical need for a supportive and informed environment.

Cultural differences further complicate this process. In some societies, chronic illnesses still carry a significant stigma, potentially leading to inadequate social support for newly diagnosed individuals. For women, especially those of childbearing age, questions like “Will I be able to have children?” are paramount. Other immediate concerns often revolve around job security, the worries of loved ones, and the patient's future plans. This experience is deeply personal and varies widely, shaped by cultural values, available social support systems, and access to information.

From Fear to Acceptance: A Patient's Journey (Sinan Elbir)

Another patient's journey beautifully illustrates the evolution from initial devastation to acceptance. "Initially, the MS diagnosis felt devastating; I even thought I had cancer," they recounted. "However, once I accessed accurate information, a sense of relief washed over me. As long as I manage my condition carefully, MS doesn't significantly impact my life. It's only when I become careless that I start to feel unwell. I am fortunate to be satisfied with our country's healthcare system, as I can easily obtain my medications. My hope is that the number of MS centers will increase exponentially." This narrative powerfully emphasizes the critical role of accurate information and accessible healthcare in empowering patients to effectively manage their condition and lead fulfilling lives.

An International Perspective: My Own MS Journey (Emrah İnan)

My own MS journey began in the Netherlands. After experiencing my first symptoms, it took nearly 14 months to be officially diagnosed with RRMS in 2014. To be truly honest, I was full of questions and uncertainty back then. Seeking a second opinion, I traveled to Türkiye, where my diagnosis was confirmed, and I received invaluable practical advice that truly helped me move forward. Those early days were a rollercoaster of emotions, but with the unwavering support of my MS team – my neurologist, psychologist, and physiotherapist – I gradually found my balance again.

As I learned more about my condition, I felt a strong desire to give back to the community. This led me to start the platform MSguncel, with the aim of sharing information and raising awareness, particularly within the Turkish MS community. I now reside in Switzerland, where I continue my treatment and remain connected with healthcare professionals and fellow patients from all corners of the world.

As I often remind myself: "Yesterday is history, tomorrow is a mystery, and today is a gift... that’s why they call it the present. So live today and enjoy the moment as much as possible. Keep on smiling (GülüMSe in Turkish)!"

In some communities, MS is still surrounded by misconceptions, while for others, receiving a diagnosis brings a sense of relief—finally, a name for what had been unknown. Yet, there are still regions where accessing a diagnosis remains delayed or difficult. Women, young people, and those from minority backgrounds often face additional layers of complexity in this journey. Diagnosing MS is not just about reading an MRI scan; it is about accompanying someone with empathy, transparency, and trust. That’s why communication, patience, and cultural awareness are vital for both the patient and the healthcare provider during the diagnostic process. A MS diagnosis is not an end, but the beginning of a new path—so long as no one is left to walk it alone. Dr. Seferoğlu's ultimate dream for the future is to be able to tell her patients that there is a cure for MS.

Patient had informed consent to publish their own perspective of their MS journey.