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Slowing Down the Progression of Vision Disability: A Crowd Based Research Angle.

Updated: Sep 1, 2022

Depending of a few well defined diseases and sometime your genetic makeup, you may be lucky enough to have a therapy working to restore your eyesight. For others, it's not necessarily a possibility. The strategy your doctor will offer may be about preserving what you have left and/or slowing down the progression of your disease.

The web is full of miracle products and success stories. Most of them are bogus of course... (a trip to a foreign country to try something unavailable in your own country anyone ?). Some claims are a bit more substantial and based on sciences and published papers. Most of them talk about dietary supplements such as a particular vitamin or other supplements like Omega 3.

After multiple doctor visits, I have developed quite the pill regimen. Granted, some of my supplements requires multiple pills to reach the level required by the doctor, I am currently at eight daily pills. Do they work ? Do they play placebo ? The truth is that I have better eyes days than others and it seems that bad days are coming when I forgot my pills.

And then there is the odd side effects on medications or lifestyle choices. For example, my eyesight seems to improve dramatically after a heavy handed workout. I also appears to be much more light sensitive when I am under ibuprofen.

I am a scientist in my core and I am very aware of bias but when I hear others sharing the same experience using the same supplements, medications or other things as me, I always take a step back.

What surprises and often angers me is how these shared experiences moments occur. Pure luck.

Medical papers and scientific papers in general are usually published because the research associated to them are expansion on other previous papers.

It is cheaper to do research this way. Building on someone else's proven research makes the next one more likely to be positive.

What about mixing things up ? What about research about what people actually experience ?

I am not going to pretend that I am going to change the world but I am willing to try.

Let's share our personal experience and give us a chance to meet others who share the exact same experience. Maybe there is something behind it science has not had a chance to consider.

In order to work on this idea, I am going to star a new topic of discussion on our forum page, under Resources submenu and share my experience. I would like to encourage you to share your own. Maybe down the line, we will be able to find a trend or common story. Lets call it experience rooted crowd based research.

Let me know what you think in the comment section below.

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