Rare Disease Week is a time to recognise the resilience, courage, and lived realities of people navigating conditions that are often misunderstood and underfunded.

Inherited Retinal Diseases (IRDs), including Stargardt’s Disease, are classified as rare conditions. For many families, a diagnosis brings uncertainty, limited treatment options, and the need to constantly adapt to progressive vision loss. Yet within our Retina South Africa community, rare does not mean alone — and it certainly does not mean without purpose.

For Linsay Engelbrecht, living with Stargardt’s Disease has never been about limitation. It has been about redefining possibility.

A Diagnosis That Changed Direction — Not Determination

At the age of 23, Linsay was diagnosed with Stargardt’s Disease, a genetic macular degenerative condition that causes progressive loss of central vision. Unlike total blindness, Stargardt’s affects detailed vision — reading, recognising faces, driving, and navigating unfamiliar environments become increasingly challenging.

A rare diagnosis often comes with invisible emotional weight: grief for what may be lost, fear of the unknown, and the quiet question of “What now?”

For Linsay, the answer was not retreat — but resolve.

Supported by both her parents — and especially her mother, Jenny, who went to extraordinary lengths to source specialised spectacles and provide practical support — Linsay chose to adapt rather than withdraw. Like many living with IRDs, she learned to adjust lighting, memorise spaces, plan ahead, and advocate for herself in environments not always designed for visual impairment.

Today, she also credits the incredible support — and healthy challenge — from her husband, Deon. A fellow sports enthusiast, Deon has encouraged her to keep pushing boundaries, reminding her that resilience grows when we stretch beyond what feels comfortable.

Rare disease demands resilience — and resilience grows through community.

Finding Strength Through Sport

Physical activity became more than exercise; it became empowerment.

Despite her visual impairment, Linsay completed two Comrades Marathons — running without a guide during the race itself, relying on spatial awareness and verbal support during training. She improved her time by ten minutes in her second race, proving that adaptation and ambition can coexist.

She later transitioned into para-triathlon, competing internationally with guides in swimming, cycling, and running events. Her achievements include podium finishes at African Para-Cup events and representing South Africa at the 2022 Commonwealth Games.

More recently, she took up lawn bowls and won gold at her first South African National Championships in her classification category — a reminder that it is never too late to try something new.

For Linsay, sport reframed vision loss. Racing guided by someone “lending their sight” became a powerful metaphor for interdependence and trust. Movement shifted focus from what had been lost to what remained possible.

For many people living with inherited retinal diseases, physical activity supports not only general health and eye health, but also mental wellbeing, confidence, and social connection. Sport becomes a space where ability is recognised before limitation.

Turning Personal Journey into Community Impact

Rare Disease Week also highlights advocacy – because awareness drives research, and research drives hope.

As part of Retina South Africa’s leadership team, Linsay serves as Head of Special Events and Para Sport Development. In this role, she expands inclusive sporting opportunities and leads fundraising initiatives that support research, awareness, and vital member services.

She is also the newly appointed Race Director of the Dis-Chem Ride for Sight, Retina SA’s longest-running flagship cycling event. The event brings together professional cyclists, recreational riders, tandem teams, handcyclists, and para-athletes – creating a visible demonstration of inclusion in action.

Under her leadership, the event continues to prioritise safety, accessibility, and increased para participation, while raising vital funds that support individuals and families affected by inherited retinal diseases.

Living Rare — Together

Living with Stargardt’s Disease does not define Linsay’s life — but it shapes her perspective.

It has strengthened her empathy for newly diagnosed individuals navigating uncertainty. It has deepened her commitment to awareness and advocacy. It has reinforced the importance of early diagnosis, genetic testing, and sustained research funding.

Rare diseases can sometimes feel isolating. But within Retina South Africa, every story contributes to something larger — a collective voice calling for visibility, treatment advancement, and inclusion.

An Invitation to Share Your Story

One of the most powerful tools we have during Rare Disease Week is storytelling.

Stories educate.
Stories build empathy.
Stories remind others that they are not alone.

We invite you to share your journey with us.

• What has living with an inherited retinal disease taught you?
• What challenges have you overcome?
• What gives you hope?
• How has community support made a difference in your life?

Your story may inspire someone newly diagnosed. It may encourage a donor to fund research. It may help a policymaker understand the real-life impact of rare disease.

If you would like to share your story — written, audio, or video — please contact Retina South Africa at headoffice@retina.org.za.

Because rare is powerful.
Rare is resilient.
And rare, when united, is unstoppable.