Here's what I've learned so far about RP that no one really clearly explains:

1 - It is fundamentally a metabolic disorder of the eye.

2 - Your photoreceptors can lose function either because they don't get enough resources to function, or the byproducts they produce aren't removed quickly enough, and result in toxicity. This happens occasionally, not continuously, which is why you don't go blind right away - so you have to try and figure out what is disrupting that system for you. Usually your rods lose function first, and your cones survive for a while, but go dormant.

3 - Your lifestyle and diet can influence both.

4 - Likewise, scientists can cause retinitis pigmentosa in mice artificially, even mice that aren't genetically susceptible.

5 - It is a rare disorder, but almost half of cases have no single genetic cause. A lot of researchers like to talk about gene editing - but think about it this way...if you have fair skin you are more susceptible to damage from the Sun. Does this mean you should get gene therapies to produce more pigment? Or simply avoid long exposure in the sun? It's becoming more likely that many RP patients can benefit from lifestyle interventions that aren't easy to measure in a clinical trial, due to the immense heterogeneity of the causes.

6 - The most important things to do to maintain vision in people susceptible to retinitis pigmentosa:

a) A healthy sleep schedule - wake up with the Sun, avoid bright lights after sunset. The metabolism of your retina is very sensitive to your circadian rhythm, and your circadian rhythm gets its cues from sunlight (Intrinsically photosensitive retinal ganglion cells). Get 10-15 minutes of outdoor morning sun each day first thing - it starts your clock. It helps you sleep better. When I started doing this, I couldn't believe how tired I would get around 11 pm. It is crazy how well it works. I wear orange colored glasses after dark. Personally I use $1.

b) It is essential to have blood vitamin D levels above 40 ng/ml. Vitamin D deficiency is associated with retinal degeneration, and is very common. I take 5000 IU of vitamin D + vitamin K each day, and 100 mg of magnesium taurate at night.

c) eat a diet that consists of at least 1 g of omega 3 fatty acids per day (a pack of sardines), and tons of vegetables. Spinach and broccoli have basically all the vitamins and nutrients you need to function optimally. Also don't eat 3 hours before bed, and wait at least 1 hour before eating after waking up. Time restricted eating is a major health booster. This is because it takes energy to digest food, and when you're digesting food, you're doing less other body maintenance. I only eat between noon and 8 pm, for example. It becomes easy and a routine pretty quick. Don't overthink it, though, if you're hungry, eat. Just try to have long periods of fasting.

d) As you get older, your metabolism slows down. One thought is that the levels of NAD in your body decrease. Some research indicates that supplementing your NAD can slow the progression of retinitis pigmentosa. Look into supplementing your diet with NR or NMN. I personally take 500 mg of NMN per day. As I get older I'll bump it to 1 g.

e) eat \~10 goji berries a day. Research shows the compounds in goji berries clinically reduce the rate of progression of retinitis pigmentosa. I do this.

f) Get your heart rate up every day - the faster your heart rate, the more blood passes across your retina, the more garbage is collected. We're talking a 30 minute walk, or a 5-10 minute HIIT workout each day. I use Apple Fitness, they have great HIIT workouts.

g) jCell therapy is designed to support the function of the retina, to help provide resources to function - your diet and lifestyle can do similar things, to varying degrees of effectiveness, depending on the severity of the insults in your retina. ReNeuron is working to replace dead photoreceptors and support retinal function. David Gamm is working to grow a brand new retinas for those who have substantial loss already. I don't consider other developments in research to be worth following. I think either you regrow or reinstall photoreceptors after they've died, or you support the ones that are already there. It seems to me that individual gene therapies are risky business, except for those rare 1-2% of cases with obvious singular genetic causes.

I am a sample of 1, but after diagnosis and adopting these lifestyle changes, my visual fields have expanded and my visual loss is stable. My personal interpretation is that I've restored the function of some cones, though the rods I've lost are gone forever. Of course, they are less important for sight and navigation.

Depending on where you live, there might already be existing groups and association.

In Switzerland there is retina.


You might want to check the Retina International Virtual Youth Conference for instance

https://retina.ch/agenda/retina-international-virtual-youth-conference/

And in the UK we have:

Retina UK: https://retinauk.org.uk/?cn-reloaded=1
Macular Society: https://www.macularsociety.org/

Both keep up to date with such research on RP & Stargardts.

I would be really interested in subs focused on specific eye conditions but haven't found anything that posts regularly other than this one