Author Topic: Sjogren's Support Group Meeting  (Read 4760 times)

AGreyLowry

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Sjogren's Support Group Meeting
« on: August 13, 2009, 07:57:41 AM »
Hello Everyone;

My name is Audrey and I am the leader of a Sjogren's Support Group in the Plainfield, Illinois area.

I would like to invite anyone that lives in the Plainfield area to attend our meeting. Our next meeting will be next Thursday the August 20th at 6:30 pm. The address for our meetings is 2400 Glenwood Ave, Joliet, Illinois. We will be listening to a tape from the 2007 Sjogren's National Conference. The topic is Urological Manifestations of Sjogren's Syndrome. The speaker is Kristene E. Whitmore, MD Chair of Urology and Female Pelvic Medicine and Reconstructive Surgery, Professor of Urology and OB/GYN, Drexel University College of Medicine.

Each attendee will be able to share anything they would like with the group after the tape session.

hoping

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Re: Sjogren's Support Group Meeting
« Reply #1 on: August 13, 2009, 11:22:20 AM »
HI Audrey

I'm in Kansas, grew up in Chicago area.  Just found out we have a Sjogren support group here and will attend next mo.  Your topic sounds well-needed.  I developed bad interstitial cystitis of the bladder.  It is so painful.  Is there any way to get a hold of that lecture?

Karin

Katybarstool

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Re: Sjogren's Support Group Meeting
« Reply #2 on: August 13, 2009, 01:16:21 PM »
Hi Audrey

Your meeting sounds really interesting - wish I was near enought to come, but I'm in the UK. Is there any way the tape could be accessed through the internet, or if there are slides available?

Kathyx

Dolly Dimples

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Re: Sjogren's Support Group Meeting
« Reply #3 on: August 13, 2009, 02:02:47 PM »
  Welcome Audrey,
                           Like Kathy I too am in the UK, but very interested in anything that is going on about SS.
 
                          Please let us know if anything interesting comes up, I hope yoiu get many supporteres nearer home to attend the meet.
                           
                             Poor Lauren will be very interested in this, as she is having a pretty bad time of it in hospital with this condition.

                                                                              Good Luck, Dolly.x
                                   

wordnerd

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Re: Sjogren's Support Group Meeting
« Reply #4 on: August 13, 2009, 09:10:46 PM »
I am very interested in this!  Thanks for thinking of me Dolly!  I'm also interested to know if there's going to be a online recording or some other way to get a copy of the session?  Thanks!

-Lauren

allium

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Re: Sjogren's Support Group Meeting
« Reply #5 on: August 14, 2009, 05:21:46 AM »
Thank you for the helpful post, Audrey.

I did find a link to a lecture on the web about chronic pelvic pain and IC with Dr. Whitmore as a participant:

http://cme.medscape.com/viewprogram/8032

You have to register as a member of Medscape to view, but I have found this site to be a wonderful source of health information.

It's not specific to SjS, but may give a little info on the disorder in general.  And, there are slides!  It says it runs 45 minutes.  Hopefully, the other video will turn up soon.

Hope this might help those who suffer from this.  It sounds pretty miserable. 

Sheila

Epson

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Re: Sjogren's Support Group Meeting
« Reply #6 on: August 14, 2009, 11:22:36 AM »
I was wondering how many members you have?

6blessings

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Re: Sjogren's Support Group Meeting
« Reply #7 on: August 15, 2009, 08:06:49 AM »
I am so excited  ::). A meeting finally somewhere close. I am going to try and make it. My daughter is 12 and she is really struglling with it right now. They cant seem to keep it under controll. If anyone knows of any  other meeting let me know. I am in Indianapolis, In. I would be more then willing to start one myself. Take care all.

jpd54

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Re: Sjogren's Support Group Meeting
« Reply #8 on: August 16, 2009, 02:13:53 PM »
It sounds great to have support groupt nearby.  Anyone in Arkansas that would like to have one????


   jpd
SJS, Fibro, Osteoarthritis, Osteoporosis, GERD, Rosacea, TMJ

Celebrex, Gabapentin, Lasix, Potassium,Hydroxychloroquine, Lexapro, Lisinopril / Hydrochlorothiazide, Linzess, Metoclopram, Nexium, Oracea, Savella, Simvastatin, Vitamin D, Voltaren

Patze

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Re: Sjogren's Support Group Meeting
« Reply #9 on: August 16, 2009, 02:39:18 PM »
Let me also welcome you to the SJS World Audrey!  I'm so glad that you've already got a support group together!  Wow, you're amazin' lady! :D

I wish I could join you too, but I'm on the east coast and I have enough problems trying to remember how to get to the local stories! ;) :)  Seriously though, I wish you and your group well, and I hope that the meeting is a smashing success (the topic is amazing and so timely for some of the members)!!!!

Again, welcome and come often as we'd like to get to know you a bit more.

Take care -

Patze
Our home page  http://www.sjogrensworld.org/index.html
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irish

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Re: Sjogren's Support Group Meeting
« Reply #10 on: August 16, 2009, 09:43:11 PM »
6blesings, Have you tried calling the Sjogrens Foundation about the criteria needed to start a group. It is so great that you are interested and willing to start a group. The people at the Sjogrens Foundation are really nice and helpful so don't be afraid to call.

I am afraid that I lost the number but I think a "google" or a post from some other member will come along. Good luck. Irish ;D

Joy Cox

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Re: Sjogren's Support Group Meeting
« Reply #11 on: August 17, 2009, 06:25:02 AM »
I am afraid that I lost the number but I think a "google" or a post from some other member will come along. Good luck. Irish
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Hey, its Monday and as a newbie to SWorld am going to try something. Have copied email I wish to reply to as 'fogs' are a daily thing with me and plan to erase it before sending reply as forget what I was wanting to discuss. Trust I am not the only one that has daily fogs. Almost want to stop this email right here... as spelling and composition are not coming easily!!! Here is phone number of Sjogren's Foundation in Bethesda, MD: 800.475.6473. Btw, they publish a monthly newsletter, The Moisture Seekers, monthly. For those that have fibro, there is in depth article about Fibro in Sjogren's Syndrome in May and June 09 issues. And... www.sjogrens.org will give you info as how you can subscribe to their newsletter and much more info.

PLEASE do not mention to me that there is a link that one can go to Foundation info from this site... I'm not  a 'think the word is guru' on a computer, AND TOO, AM PAST BABY BOOMER AGE!!!!!  Bear with me or is that bare????