Announcement: PANS/AE/Lyme Teleconference Tomorrow!

Hi everyone, I’m excited to share that tomorrow (Saturday) is the launch of the first-ever teleconference support group for teens and adults with PANS, AE, Lyme and other similar/related conditions.  Let this be your official invitation!

Join me at 2PM EST (7PM GMT) tomorrow.

Call (605) 472-5395, and enter the meeting ID: 339705. 

International numbers…

  • United Kingdom: +44 330 998 1320
  • Germany: +49 221 98203452
  • Sweden: +46 8 420 020 30
  • Denmark: +45 93 75 41 50
  • Norway: +47 52 90 06 78
  • India: +91 172 519 9257
  • Ireland: +353 1 907 9734
  • Poland +48 22 263 97 36

Click here for even more countries.

So What’s it all about?

My vision is to have a safe space where teens and adults with these illnesses can meet and talk to others going through the same things.  Although there are already some Facebook groups, not everyone has an account or wants to share with strangers in that setting.  Hence, the teleconference format.

It’s lonely and hard to discuss so much of what we face with friends from “real life.”  And there might be things you want to talk about with someone other than your parents, too.  (Sometimes I feel like I dump way too much on mine and wish I had friends I could turn to who understood.)

Although I’m glad for the many online support communities for parents, it’s sad to me that there’s almost nothing for those of us who actually live with PANS ourselves.  I realized that my large following has put me in a unique position to be able to change this.

(If demand exists, perhaps I’ll do something for parents in the future, but I felt like I needed to start with other patients themselves since there’s so little for us as it is.)

How does it work?

It’ll be an hour or two long, and you’re welcome to come and go or even just listen if you’re too shy to say anything.

I’ll start the call saying a few words on the theme of the month to get the conversation going, and then we can all discuss it.  At the end, there’ll be a time when you can bring up anything else you’re dealing with that might not have come up in talking about the theme.  It’ll be informal, and it may evolve over time once I see what people are looking for.

Check out the Facebook event here, and share with anyone who might be interested!

This may be the first meeting, but it shouldn’t be the last!

I’m calling it “Second Saturday Strength” because if it goes well, it will happen on the second Saturday of every month.  I hope to see many of you soon! 🙂


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