Good Resource

[jacooper]

If you found this web site, you probably already found www.cystinuria.com, The Cystinuria Support Network. In case you haven't, this is a good resource also. FYI...http://www.cystinuria.com

[Matt Lewis]

Yes, cystinuria.com is a very good source of information, and their listserve (mass group e-mail list) has been an effective method of communication for many years. I've been a member there for over a year now, since Kathy's 1st stone episode.
I do find it a bit light on the technical side there, as it is more of a support group than a tool for education. That is partially the reason for creating this site; i hope to get more into helping people with the disease understand more of the technical aspects of what is going on in easy to read tutorials (www.cystinuria.org/rm101.htm). However they have an excellent member base with outstanding knowledge and opinions. Also, Dr. Goldfarb's writeup in the "contributions" section of cystinuria.com is a must read for anyone with the disease. He himself is on the list serve and responds with great info and advice from time to time.
Anyhow, per Jann's private wishes, i personally am not at liberty to tell anyone on that listserve about cystinuria.org. :( However, if anyone there would like to spread the word, i think it would be a great thing for cystinurics to have more than one source of info.
With that said, i think that cystinuria.com is definitly worth a look. There's alot to be learned there, and some really great people to boot! Thanks for the good resource info! :)
matt

[Kathyblue]

Yeah, the site is very good! Haha, but if you decide to sign up for the listserve, be ready to have your e-mail inbox filled most every day. And since every e-mail goes to every person, the majority of e-mails i recieve are not significant to me anyway, so i end up deleting many of them.
Because of that and the large ammounts of e-mail each day, i'm not the biggest fan of the listserve approach. Besides being old technology, it does get annoying to have to sift through so much e-mail, and if you delete something without reading it, you feel like you might have missed something. The people there are great though, so i'm not leaving just yet. I was hoping Matt could resolve things with Jann as far as mutual support between groups, and i know he's trying...
Anyhow, DO check out what's available there; at least the material that you don't have to have paswords and such to access. :rolleyes:
Good people with good info! :)
~kathy
BTW, i think that's in the www.cystinuria.org/links.htm page, along with some other good resources. Good post jacooper, and welcome to the board! :)

[tgode]

Signing up for Cystinuria.com does not mean you have to fill your inbox every day. If you want, you can be signed up in what's called a digest version. Digest members receive only one email per day with all the posts from that day rolled into one message.

Tim Gode
Cystinuria.com moderator

[miababydoll]

Hello , I just found out about this group . Sorry if this topic was talked about a while ago . I just joined this group . Im also in jann's group . I think both are helpful in different ways . There are things Im finding in this group already that I never knew about . I guess you learn something new everyday . I have over the years found that I if I want to learn anything I need to educated myself. No one else will . Im 25, married , trying to have kids , found I have thyroid problems as well . I began getting stones when I was 22 years old . I've had 24 surgeries , multiple stones lost track. A nephrosphy tube . Always have chronic pain . Also have a sister with cystine stones as well hers isn't as bad .

Meleah