View Full Version : Back from the Sjogren's Conference

04-11-2010, 12:47 PM
Hi everyone!
I'm home from the conference and starting to recover. It was a fun, hectic three days for me and I learned a LOT of information. Many of our questions were answered, and then some! I'm going to break my report down into sections according to each presentation that I saw, and I'll post each one as I finish it, so watch for my posts. The good thing is that much of what was presented can apply to any autoimmune disease.

The greatest thing about the conference was seeing 300 other people who are like me. I use a cane, and have fairly disabling neuropathy, and it was cool to walk (hobble?) up to someone else who was walking on a cane just like me, for exactly the same reason. I made a huge number of new friends, including my sweet room-mate, BonusMom. It was great to finally meet each other, and to talk about all that we have in common. Phyllis, you were right. It was like meeting a sister, and we were able to understand each other very well.

The other great thing about the conference was meeting all of the incredible doctors there who actually "get" us, are listening to us, and are struggling to help the medical community to have a better understanding of SJS and the other autoimmune diseases. One doc mentioned that there are 196 known autoimmune diseases! They are my new heroes.

I'll have my MTX injection tonight, so I'll spend tomorrow recovering from that and typing up those presentation reports, so watch here tomorrow. I'll be off to San Francisco again on Thursday to the medical center to get my Botox injection for Spasmodic Dysphonia, so that gives me three days to post my reports.
Until tomorrow,

04-11-2010, 03:08 PM
thanks for going to the conference marla, I look forward to your reports


04-11-2010, 08:24 PM
How can I top what you posted, Marla?

It was an unforgettable three days and to have met my Sister in Sjogren's was such a fabulous and unforgettable experience! I cannot express how wonderful it was to meet so many others who strongly identify with the same issues that I face myself and, of course, Marla.

The information that was relayed to the attendees was valuable and on point. I would highly recommend that if you have the opportunity to attend a conference for the medical conditions that you suffer from, do it! Truly, the camaraderie was worth the price of attendence in itself and I feel so fortunate to have been able to go.

Since Marla is the educator, I will leave her to post her summary of the topics covered, which were not all SjS related, by the way.

Oh, and I also had the pleasure of meeting Marla's dear husband who sat in on Saturday afternoon's presentations. I am inspired by their obvious affection for one another and hope that my husband will one day attend a conference with me. Until then, I will share what I learned with him and encourage him to ask questions.

I have posted a photo of Marla and I at the award's banquet on Friday night. And, as great as a margarita would have tasted, the large "glass" in the foreground was a bowl with floating candles in front of us, not a salt rimmed mambo glass with liquid spirits!

04-13-2010, 12:45 PM
oh darn bonusmom....i was hoping that your picture of you and marla would have been one after several of those really huge glasses of margaritas....oh, maybe another day.

thanks to you for sharing with us.

04-13-2010, 05:18 PM
oh darn bonusmom....i was hoping that your picture of you and marla would have been one after several of those really huge glasses of margaritas....oh, maybe another day.

thanks to you for sharing with us.

Although we didn't have any Marla-Rita's, we did have a couple of White Russians in your honor, Phyllis!

04-13-2010, 09:13 PM
I am so happy that you two were able to attend, to be roomates, and that you were impressed by the conference! Can't wait to see the notes!!

Peace and Blessings

04-14-2010, 01:04 AM
I'm so happy you both had a great time and gained so much! Thanks for sharing with us. I've got new things I want to dig into about SS that I had no clue about before.

It's so great to get to meet people from our WHL family. Meeting Phyllis was like meeting a friend I've known for years and was so comforting to talk with someone face to face that deals with so many of the same physical issues. I missed out on meeting our sweet Nonna this month because the kidney stone canceled my rheumy appt in Atlanta. I'm still bummed about it, but looking forward to trying again.

There's a Lupus support group that will start meetings next month that is only about 25 minutes from my house. I'm really looking forward to that also!

Thanks again for sharing with us!