29 November 2023 by Motsamai Mokotjo

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I vividly recall the days when the sun painted the skies in hues of pink and orange as we embarked on our daily journey to Ladybrand Academy from Maseru.

Nthabeleng Ramoeli, fondly known as Madotz, was my companion on those rides, a friend whose resilience and strength would later inspire a movement of compassion and advocacy.

As I reflect on those school days, a flood of memories comes rushing back, and I can’t help but feel a sense of pride in having known someone who has emerged as a beacon of hope for those grappling with rare diseases.

The genesis of this journey down memory lane was a poignant article that caught my eye, titled Unmasking Africa’s Neglected Health Crisis: Rare Diseases that Escape Western Medical Radars, published by Uncensored News.

It served as a poignant reminder of Madotz’s extraordinary journey and the battles she faced silently within the corridors of our alma mater.

Madotz, like any other student, had dreams and aspirations, yet her path was marred by the shadow of a rare condition—Ehlers-Danlos Syndromes (EDS).

This disorder, affecting muscles, joints, and organs, manifested in unpredictable flare-ups, leading to her absence from school for days at a stretch.

The solidarity among Basotho students, woven tightly as a community, intensified our concern whenever Madotz was missing.

We were not merely schoolmates; we were a support system for each other, and her absence left a palpable void.

In the Uncensored News article, Madotz resonated with those who shared similar struggles, stating, “you have a flare up and feel fatigued, they [people around] say, ‘Go and rest.’”

 Her words echoed the whispers we exchanged as classmates, urging her to prioritise her health over the demands of academia.

However, Madotz, fuelled by an unyielding spirit, was determined to transform her personal battles into a broader crusade.

In those formative years, as we navigated the labyrinth of adolescence, Madotz faced challenges that seemed insurmountable.

The article shed light on the magnitude of the battle, with Madotz emphasising, “Whatever fatigue you experience, multiply that by ten for individuals with conditions”.

As her peers, we were witnesses to the silent struggles, yet unaware of the profound impact her journey would have on the broader narrative surrounding rare diseases.

It was during one of her recuperative phases that Madotz shared her aspirations of establishing an organisation that would serve as a voice for those silently grappling with rare conditions.

Little did we know that her vision would materialise into the Rare Disease Association Lesotho, an organisation that stands testament to her unwavering commitment to advocating for the rights and well-being of individuals facing similar health challenges.

Madotz’s journey from a determined student battling EDS to the founder of an influential advocacy organisation is a testament to the strength that resides within individuals facing the isolating reality of rare diseases.

It prompts us to reflect on the broader issue at hand—the neglected health crises that often escape the radar of Western medical systems.

In the pursuit of comprehensive healthcare, rare diseases frequently linger in the shadows, overshadowed by more prevalent health concerns.

The Uncensored News article compellingly unravels the layers of this neglected crisis, exposing the intricate challenges faced by those grappling with rare conditions in the African context.

It serves as a clarion call for increased awareness, research, and support systems tailored to address the unique needs of individuals like Madotz.

Madotz’s story, intertwined with the broader narrative of rare diseases in Africa, invites us to reconsider our societal approach to healthcare.

Her journey from a concerned student missing days at school to a fervent advocate standing at the forefront of the battle against rare diseases mirrors the transformative power of resilience and determination.

It challenges the prevalent narrative that often sidelines individuals with rare conditions, urging us to acknowledge their struggles and amplify their voices.

As we delve into the intricacies of Madotz’s journey, it becomes apparent that the establishment of the Rare Disease Association Lesotho was not merely a response to personal adversity but a deliberate effort to dismantle the barriers faced by countless others.

The organisation serves as a bridge between the unheard narratives of those with rare diseases and the wider community, fostering understanding, empathy, and a collective commitment to change.

In a world where the voices of individuals with rare diseases are muted by the cacophony of more prevalent health concerns, Madotz emerges as a symbol of resilience and advocacy.

The association, under her leadership, strives to dismantle the stigma surrounding rare conditions, creating a platform for dialogue, support, and, most importantly, change.

The journey from our school days in Ladybrand to the establishment of the organisation underscores the transformative power of an individual’s determination.

Madotz’s story challenges us to re-evaluate our societal priorities and advocate for a healthcare system that embraces inclusivity, leaving no one behind.

Her journey serves as a poignant reminder that within the corridors of everyday life, there exist individuals battling silent wars against rare diseases.

The article, by bringing this neglected health crisis to the forefront, catalyses a broader conversation that demands our attention and collective action.

As we reflect on the past and celebrate Madotz’s achievements, let us also commit to being allies in the fight against rare diseases, ensuring that no one’s struggles go unnoticed, and their voices resonate far beyond the confines of silence.