Friday April the 13th and April 14th will be a sjogren's conference in Denver, Colorado. It will be held at the Hyatt Regency Aurora-Denver Conference Center. It starts at 12:30 Friday the 13th at 12:30 for Registration and the Exhibit area opens. There will be some speakers with a Banquet Awards Dinner with a Keynote speaker and Awards for groups given out. Saturday the Registration and Exhibit opens at 8:30. They have an agenda for that day and it closes at 4.
It will cost members of sjogren's syndrome Foundation $190 per person and $210 for a non-member. This does not include where you stay. If you had made reservations by March 21st you would have had the early bird cost of $170 for members and $190 for non-members. If you had the early bird time (March22) you could have made reservations to stay at the Hyatt if they still had rooms set aside, for $132 plus tax and I'm not sure if there was anything else. Special prices for Vegetarian meals or gluten-free meals but those were the only different meals you could have.
I said that was very expensive for many and did they have something to help with the high money costs? He didn't know but would hunt someone down. I also asked if this was a feel good talk or do you get some real information that is new and helpful. He thought it was real. I did ask if some of the money went to research, but he said he doubted there would be much left over for any research.
I asked if they did anything about warning people about snake and oil schemes and he didn't know. He asked if I could give him one. I did, complete with all you would need and he started in on legal issues. I said no, I would not have anyone mention any names etc. or relate an issue to anyone, but if the SSF at least warned patients of others who tended to have cures etc. and had patients paying for things that did not work. Did they at least tell the patients to be cautious on something new and check with their doctor plus maybe another doctor and find out all they could. No, they did not do that, but he thought he might mention it.
He didn't know too much but that may be because he was young (or he sounded young to me) and maybe they are restricted on saying anything about certain things. He was quite pleasant.
I won't be going to the conference, but would be curious to hear what others thought, if they don't mind sharing.
Confused, I attended a conference years ago. There was much substance to the sessions, but most seemed geared toward people who were very new to the disease and didn't know much. I had already done substantial research so didn't learn a great deal that was new.
I did appreciate being with others who had SjS and seeing that top docs care about us. I was though distressed by panelists who spoke about having to quite work, and one told me to anticipate taking 22 pills day, I wanted to go home and commit suicide.
I think that the Foundation takes a more positive approach these days, but sense that the conference sessions are still relatively basic. FYI you can order recordings of session, those are much less expensive than attending.
I have been concerned about snake oil and even wrote a scathing post to the Foundation after they recently touted a book from a doc who says you can be cured just by changing your diet. I've tried it all and asked multiple docs about diet, nothing worked and no one has suggested that it would be a cure. Am I healthier than I might be due to some changes? Yes, but far from cured. Do I think gut is involved, yes, but there are millions of bacteria and other things in our guts, which one do we point at to find a cure? I don't believe that anyone really knows.
Hope this helps.
I have recently been told by a doctor that Sjogrens and Fibromyalgia (which I have both) just enhance what is already going on with you. For example, if you have arthritis in your hip (which I do), Sjogrens or Fibromyalgia did not cause the arthritis, they just enhance the pain. I think there is some truth to that. Yes, Sjogrens does cause your dryness and Fibromyalgia has its wonderful perks too, but if you have other systemic problems, it may not be caused by Sjogrens or fibromyalgia. For example, I have blood pressure problems. If I lose weight and reduce my stress level, I just might have decent blood pressure. I am taking a medicine right now that seems to kick up my muscle pain a few notches when I take it. I stopped taking it for a couple days and the pain stopped. Started taking it again and the pain is back. Sjogrens and Fibro did not cause the blood pressure problem, but the medicine did cause some side effects that were enhanced by having Sjogrens and Fibromyalgia.
I don't believe there is a cure for Sjogrens yet. I believe diet might take away some of the enhancements, but not the disease. Just saying....
Quote from: SjoGirl on April 04, 2018, 02:19:25 PM
I have been concerned about snake oil and even wrote a scathing post to the Foundation after they recently touted a book from a doc who says you can be cured just by changing your diet. I've tried it all and asked multiple docs about diet, nothing worked and no one has suggested that it would be a cure. Am I healthier than I might be due to some changes? Yes, but far from cured. Do I think gut is involved, yes, but there are millions of bacteria and other things in our guts, which one do we point at to find a cure? I don't believe that anyone really knows.
There are two books they sell online that I was just introduced to within the last month. Both made me mad. One author out and out selling snake oil and another stating with certainty a lot of pet theories that aren't well-supported by research. While my symptoms have responded positively to a diet change I made quite a while ago (though I'm certainly not cured), there's no one-size-fits-all treatment for autoimmune disease, and I think any doctor selling a "lifestyle cure" they claim will help everyone is at the very least behaving irresponsibly. I was also disappointed to see the Foundation seemingly supporting these doctors.
I will be attending the patient conference this Friday and Saturday in Denver. I am gullible by nature, so appreciate the snake oil warnings above.
I am looking forward to being surrounded by people who are in my same boat, as my circle of friends/acquaintances cannot begin to understand my daily struggles, since I look "normal." My sons are sympathetic, as the Raynaud's can be severe at times. Ironically that is the least of my suffering, but the most visual to others.