Keith Eales, our CEO, shares his personal journey with sight loss and how his experience ignited his passion to help others in a similar position.
February is Low Vision and AMD Awareness Month, and for me, it strikes a very personal chord.
Nearly ten years ago, I became one of the many diagnosed with age-related macular degeneration (AMD).
I remember the moment vividly. I noticed something which at first, was easy to dismiss – straight lines didn’t look quite straight when I looked at them.
Within weeks, gaps were appearing in the centre of my vision and I was diagnosed with Age-Related Macular Degeneration.
The speed at which all this was happening was frightening.
What made it harder was that I had grown up watching my father and other family members lose their sight, so straight away, I thought I knew what lay ahead for me.
From the moment of first symptoms through to diagnosis, I’d had a lot of thinking time and envisioned the worst scenarios without stopping calmly to ask myself, ‘What does this diagnosis actually mean for me?’
My sense of independence suddenly felt uncertain, and I was worried about what was next and how my life would change.
Treatment and the slow return of hope
Fortunately, I was diagnosed with a form of AMD for which treatment was available. The early intervention meant regular eye injections, which were difficult and uncomfortable, but when the alternative is irreversible sight loss, it quickly becomes not just tolerable, but something to be grateful for.
Thankfully, much of my vision was restored and after almost five years under the care of a specialist Macular unit, I was signed off with a stable condition.
To say I felt incredibly lucky would be an understatement.
Living with uncertainty
That said, stable does not mean fixed.
AMD requires lifelong monitoring and there have been setbacks in my vision over recent years.
The future still carries uncertainty.
But I am not the same person I was ten years ago…
Where there was once fear, there is now perspective. Where there was panic, there is preparedness.
A diagnosis that once felt like the end of everything has, in many ways, been the beginning of something entirely new.
When everything falls into place
Around the time of my diagnosis, I was working in a job I loved, alongside people I considered friends, but as my vision changed, so did my outlook.
I stepped away from that role without any clear sense of what would come next, and for a while, I was in an uncertain space.
What followed was unexpected.
After joining a sight loss charity as a Trustee, I eventually found myself stepping into the role of CEO.
When I look back now, what I thought was my world falling apart was, in fact, it falling into place.
Working in the sight loss sector was never something I would have sought out earlier in my career, and yet here I am, and I cannot imagine doing anything else.
My role can be challenging, but being part of a team dedicated to supporting blind and partially sighted people is a privilege.
My lived experience gives me a deep understanding of how traumatic a sight loss diagnosis can be. I’ve been through the sleepless nights, the questions about independence, employment, family and identity.
And I also know the power of support, research, innovation and community.
Why awareness matters
Low vision and AMD Awareness Month is not, at its heart, about statistics (although the numbers are significant).
It’s about making sure that people who are newly diagnosed do not feel as isolated as I did all those years ago.
It’s ensuring that anyone who lives with sight loss feels seen and supported.
It’s about encouraging regular eye tests because early detection genuinely changes outcomes.
We want to reduce the stigma that still surrounds visual impairment and the assumptions people make about what it means for a person’s capabilities and quality of life.
This matters enormously to me personally, of course.
Research into retinal disease is moving faster than at any point in my lifetime, with new treatments emerging and diagnostic tools improving year-on-year.
I hold on to the very real possibility that one day there will be even more effective treatments and ultimately cures.
A message for anyone newly diagnosed with a sight condition
If you’ve recently been diagnosed with AMD or another sight loss condition, it’s completely normal to feel overwhelmed as I did.
But a diagnosis is not the end of your story, and there is support available from the diagnosis stage onwards.
With medical advances, practical support, technology, workplace adaptations, and the right people around you, life continues, sometimes in ways you never expected.
Nearly ten years on, my vision may be impaired, and my future may still hold unknowns, but I have resilience, purpose, and hope.
Let’s continue to support research, support each other, and approach the future with a sense of purpose and possibility.
Keith.