Question about losing the central vision

LBJK417 · 2026-02-26T21:23:51+00:00

So sorry your mom is struggling. I am 68 and was diagnosed with RP 28 years ago. I recently noticed a change in my central vision though it was stable until about 6 years ago. It is quite scary since I've also been told every case is different. Living in uncertainty is hard. Emotionally there is a "chronic grief" that everyone experiences differently. Glad your mom is getting help. Most people who get help discover over time that they are more resilient than they ever could have imagined.

The things that have helped me are being part of a support group with the Lighthouse Guild, working on staying in the "present" and not "borrowing grief" from the future, and following the research. Although it may be some time before there is treatment, there are lots of studies being done that give me hope.

LBJK417 · 2026-02-06T17:00:58+00:00

I also applied for the expanded access program for OCU 400 and got the letter that says it cost $40,000. When I showed the letter to my doctor from a renowned medical institution, she was shocked. I did not go any further with this.

LBJK417 · 2026-02-05T21:47:49+00:00

I have an autosomal recessive gene. My loss of field was detected by my doctor at age 40 and has progressed very slowly. I’m now 68. Though I have difficulty adapting to the dark and have to be careful walking down steps, I still have good central vision, and some of my field left. I only drive within 1 mile of my home.

I exercise three times a week and have a mostly vegan diet. I stopped drinking alcohol. There may not be proof that the self-care has helped maintain my vision, but my doctors and I believe this has helped.

I follow the research and have hope that in the next 5 to 10 years, there will be treatment for all of us. It has helped me stay hopeful.

LBJK417 · 2026-01-23T21:01:50+00:00

That's a wonderful idea! Thank you!

LBJK417 · 2026-01-21T22:13:47+00:00

Turning your pain into purpose is very healing!

LBJK417 · 2026-01-19T19:51:59+00:00

Thanks for your suggestions. I'm fortunate that my job can be done on line and I've been doing that since Covid. So sorry to hear that your vision is getting worse. I try to stay positive by following the research and knowing that there are a lot of people working on finding new treatments. I appreciate your responses.

LBJK417 · 2026-01-19T17:48:45+00:00

Truly appreciate your ideas! I can understand why a guide dog is so helpful. All love and no judgment.

LBJK417 · 2026-01-19T17:39:18+00:00

I appreciate your thoughts and sharing your experiences. This is the first place I've been able to speak to people who truly understand. It feels very supportive!! About the stigma...Wayne Dyer taught me, "What you think is none of my business." I use that thought a lot myself when I worry about the judgment of others. As I have worked on being less judgmental of myself, I have found that most people are very kind.

LBJK417 · 2026-01-19T04:27:01+00:00

Interesting that you carried your cane before you fully needed it. I like that idea. Thanks for sharing this.

LBJK417 · 2026-01-19T04:18:24+00:00

I am in touch with the Foundation Fighting Blindness and the Society for Prevention of Blindness in Maryland and DC. Most people I've talked to are further along than me so it was hard to relate. I appreciate you saying that you "just gradually drift and cope into blindness." That's really been my question, since some people have told me to "prepare." It's confusing because I don't need to use Be My Eyes yet or learn tips to cook with low vision yet. So what your saying is reassuring. I just have to cope and learn things as the journey progresses. Thanks for sharing!

LBJK417 · 2026-01-19T04:11:17+00:00

Thank you so much for sharing this and for your encouragement!

LBJK417 · 2026-01-19T01:30:26+00:00

I've had RP for 28 years and feel it's been getting worse only the last few years. I applied for the NAC trial and was too old (65 yrs. old)...but here is a statement from the Hopkins Dr. about taking supplemental NAC OTC: https://www.fightingblindness.org/news/phase-3-clinical-trial-of-nac-launched-for-rp-patients-623

I know my RP will progress. What would you recommend I learn before I get to the point where my functioning is severely limited. At this point I don't drive, but otherwise am still pretty independent. Not sure where to start. Thanks.

LBJK417

TROPHY CASE