r/AskGlaucoma

Over the past six years, glaucoma has taught me many things. The most important lesson wasn't about pressure, surgery, supplements, or even vision.

It was learning that there is a profound difference between information and evidence.

Like many of you, I wanted to understand everything I possibly could. I read constantly, asked countless questions, and searched for anything that might help preserve my vision. Over time, however, I realized I had been asking very small questions about a very large disease.

That realization changed my journey.

Instead of asking only, "What should I try next?" I began seeking a different question entirely: "Who is doing the most important scientific work on glaucoma?"

That simple shift led me to expand the circle of voices I learned from: Academic glaucoma specialists. Retinal surgeons. Ophthalmologists personally living with glaucoma. Vision scientists. Researchers with no financial stake and no product to sell. Global peer-reviewed literature. Clinical investigators. Each perspective added another piece to the puzzle. I didn't find certainty — but I found something better: a deeper understanding of how science moves forward.

The more I learned, the more carefully I chose who I learned from.

What has given me the greatest sense of hope is not a promise of results, but a change in the scientific questions being asked.

For decades, glaucoma treatment has appropriately focused on lowering intraocular pressure. Today, leading academic institutions and biotechnology companies are also investigating new frontiers — neuroprotection, gene therapy, regenerative biology, and approaches that seek to better understand and potentially alter the biology underlying optic nerve disease. These concepts are no longer confined to laboratory research. They are now being evaluated through carefully designed human clinical trials.

I recently had the privilege of enrolling in one of those first-in-human studies.

The trial is sponsored by Life Biosciences, co-founded by Dr. David Sinclair, Professor of Genetics at Harvard Medical School and Chairman of the Board, whose decades of research into the biology of aging — and the science of restoring aged or injured cells to a younger state — forms the scientific foundation for this work. The trial's Chief Scientific Officer is Dr. Sharon Rosenzweig-Lipson. ER-100 represents the first cellular rejuvenation therapy using partial epigenetic reprogramming to receive FDA IND clearance to enter human clinical trials — specifically for open-angle glaucoma (OAG) and NAION. A Phase 1 first-in-human study is underway. 

As Participant 101 in a worldwide panel of only 12 patients with OAG, my injection has been successfully completed. The 56-day OSK expression is now active, and five-year monitoring and follow-up are in progress.

I share this not as a promise of results. Phase 1 trials are designed to establish safety while studying efficacy and functional vision outcomes. I have no expectations beyond contributing carefully collected data to a process that may help answer important scientific questions. Whether this particular approach ultimately succeeds or not remains unknown — that is precisely why rigorous clinical research matters.

The disease is more complex than I imagined, and that complexity continues to teach me.

I am cautiously optimistic because the science has reached a point that once seemed unimaginable — and humble because this is a first-in-human study, and the biology, not expectation, will determine the outcome. 

Above all, I am grateful to the clinicians who helped preserve this eye through meticulously planned and executed surgeries that engineered a precise and resilient ocular architecture, delivering stable single-digit intraocular pressures. I am grateful to the scientists who pursued difficult questions for decades. And I am grateful for the opportunity to contribute to research that may help patients long after my own journey is complete.

Looking back, I realize that my greatest investment wasn't in finding one more answer. It was in learning how to ask better questions.

If there is one thought I would leave with this community, it is this:

Expand the circle of voices you learn from.

No single physician, scientist, researcher, forum, book, website, or patient has all the answers. Each offers a different perspective. The more thoughtfully we seek knowledge, the better equipped we become to understand our own disease and participate meaningfully in decisions about our care.

Today that circle can extend further than ever before — into published research, academic institutions, and high-tech resources and tools that were unimaginable even a decade ago.

Protect your hope — but anchor it in evidence.

For me, hope no longer comes from the newest post or the loudest opinion, nor from chasing the newest combo supplement when its individual components already exist in pure, excipient-free forms. It comes from watching dedicated clinicians, scientists, researchers, and courageous patients work together to answer questions that only a few years ago seemed beyond reach.

Whatever the outcome of my own journey, I am grateful to contribute, in however small a way, to that process.

I sincerely hope that each of us continues to expand not only our treatment options, but also our curiosity, our understanding, and the circle of people we are willing to learn from.

Wishing everyone the very best! 

For more information on the ER-100 trial:

https://www.lifebiosciences.com/life-biosciences-announces-fda-clearance-of-ind-application-for-er-100-in-optic-neuropathies/

Buenos días este es mi informe de oct, tengo 32 años. La oftalmologa me dijo que el ojo izquierdo está bien, pero. Derecho ya pintado de amarillo la zona superior.

La presión ocular me dió 21 hace una semana y 22 ayer.

Por suerte no tengo perdida en el campo visual.

Me recetó gotas timolol 0,5 aplicadas una vez al día en cualquier horario (respetando el horario elegido). Y en 6 meses volver a otra consulta para ver cómo va a todo

Estoy algo preocupado por este tema. Opinan que ya es glaucoma?

Es controlable solo con gotas o al pasar los años sigue progresando el glaucoma a pesar de tratarlo y siendo responsable con las consultas y la aplicación de gotas?

Saludos.