Cure Together Website

[marta]

I was looking for something on Wegs the other day and stumbled on this site. It's kinda cool, but didn't have anything on Wegener's, so I contacted them and now they have something. If you're interested in filling in your symptoms, there can be a database out there for others to see. You can find it here...

CureTogether - Sign In (http://curetogether.com/wegeners-granulomatosis/survey/symptoms/)

[Sangye]

This is an awesome site, Marta. It has the potential to give us tons of great info. It allows people to add symptoms/treatments/causes if theirs isn't listed. I have a couple cautions with this, having looked at the list for Wegs and the one for migraines. Since people can add more to the lists, the lists can become enormous very quickly. The lists for migraines were so long I didn't even finish them!

1) Make sure you only add symptoms that are due to Wegs. For example, if you have nausea from a drug or another condition, it shouldn't be entered as a symptom.

2) In treatments, make sure you only add treatments for Wegs, not all the drugs or pills you might be taking. For example, I take blood thinners for blood clots that were secondary to Wegs so I didn't list them.

3) Try not to enter symptoms that are extremely narrow (eg, when I blink I see little red stars that shoot out from the sides). The migraine list is full of things like that! It makes the lists way too long. Use more general terms.

Thanks so much for getting them to include Wegs, Marta! :thumbsup:

[Brooke]

Sounds cool, I'm going to check it out!