Hello, me again.
I am going to start a project that involves making a website where we can easily see everything we know about KPRF, and then add any new information anyone finds out. The purpose is to provide an easy tool for finding what works and what doesn't, and see what people are trying. I want the site to be like Wikipedia - something everyone can update and change.

I will say again that I hate searching through the forms and chatter posts looking for information.


In the future, if this gets off the ground, I will try and create some cohesion among KPRFers so that we can try and awaken the drug companies out there and get some research done on this.

We have been chasing this goal for a long time, and I want to take a stab at making it happen.


First though, we need to get together everything we know, and do all of the testing that we can by ourselves using the products already out there, from the conventional brand name products like Eucerin Redess relief cream, to the organic like coconut oil and oil pulling, to whatever the hell you want to try...if you throw some mud mixed with tomatoes and fish oil on your face we want to know what happens.

I registered with a webhosting provider. I don't know how to make a web site AT ALL, so I would really like the assistance of someone out there that has experience. Until that comes I will read online tutorials and work on it on my own.

Below is a copy of what I want to put on the site, filled in with everything I know. Please be aware the formatting and charts in the original are lost here. Know something else? Share! Look promising or interesting? Help me out!

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KPRF – Information Gathering

What yields some improvement:
Rose moisturizing spray
Eucerin Redness relief green day cream
Eucerin Redness relief night cream
humidifying
staying hydrated by drinking water
warm muggy days

What might help
B5 pills (500mg once a day, midday) – May make skin smoother and even out the tone/color of skin

What doesn't help
Intense Pulse Laser (IPL)

Make-up that works


What I don't know about
Retin-A cream
Azaelic Acid
Oil pulling

Current treatment in testing/development that might have hope
Oil from Rosacea site
Fraxel laser treatment

Current community testing (chart)
Treatment
Members
Results


What irritates skin or causes flushing
tobacco smoke
hot rooms
poorly ventilated rooms
stress/anxiety (social situations, presentations, etc.)
embarrassment
extended exposure to sun
spicy food
alcohol
exercise
hot showers
holding a cell phone against your face and talking
dry rooms caused by indoor heating during the winter
looking in the mirror
worrying about flushing
being flushed

Current Universities or Doctors being contacted

Their response

Demographics of those with KPRF (chart)
age of onset
age now
change over time
severity of redness
severity of flushing
location live in
climate and humidity
known allergies
amount of exercise you do
gender
weight
height
pulse rate
blood pressure

Interesting but why do you say that IPL doesnt work

You should make a forum like this with those categories as subforums

Thank you for your reply.

The effectiveness of lasers seems to be under debate. I hear some people say they work, some say they don't, some say the results only last a short while. I never saw strong proof that they worked, and heard more people say they didn't so that's why I put down they didn't work. I don't know for sure though since I never tried it. And, that's really the point of this project. Sharing information, sharing results, finding out what is and isn't effective.

Forums are useful for things under debate. But I want to avoid forums as much as possible since people often get off topic, things get repeated, and they are time consuming to read through.

Oh, two more things.

Think about the people that just discovered this site. Do we expect them to read hundreds of posts to know what's going on? I am sure they would be more likely to join the community if they could see everything that's going on in a single page. Maybe a lot of people find the site, don't have the energy/motivation/whatever to read through everything, and leave. Maybe they could have been helpful. Maybe we could have helped them.

There are other KPRF sites out there but most people probably just stick to one because they figure all the sites probably have the same information and don't want to go through a whole nother forum again. Obviously it would be best though if everyone was together.