Author Topic: Sjogren's Society patient conference in Canada  (Read 7312 times)

heyamy

  • Guest
Re: Sjogren's Society patient conference in Canada
« Reply #15 on: April 10, 2008, 06:26:07 AM »
Annette,
I wore swimming goggles in desperation two years ago but you're right, they are horrible. The suction hurts. The only thing that's good is they block the wind and evaporation. I had my upper ducts plugged finally and that really helped with the moisture at times, but not the burning.
 
I just wanted to mention that if you try those cheek massages, make sure you place the fingers up high, then rub down to the jawline. Repeat. I rub in several lines and really hit the places that hurt. It feels so much better afterwards. (disclaimer that I'm not a doctor and this may not be good for you, etc, etc.)
 
Oh yeah, I did not even say anything to faithful about nasal irrigation. It's so wonderful. My husband uses those breathe right strips at night and I keep telling him to stop paying all of that money and do the irrigation but he won't have any of it. I have so few problems with my sinuses since I began. I use Nasaline and mix my own salt mixture: http://www.squipusa.com/Nasaline/nas_about.html There's a video there. I no longer buy it from there because it's cheaper elsewhere. But this method causes less mess, I think, than with other methods. At least in my experience.

Amy

DanzGrl

  • Guest
Re: Sjogren's Society patient conference in Canada
« Reply #16 on: June 12, 2008, 08:35:53 PM »
Annette,
Thank you for all the information...Could I ask for a bit more?  Would you mind sharing the anti-inflammatory diet suggestions?
I could not figure out a better spot to post this.

The Sjogren's Society of Canada held its Second Annual National Patient Conference on April 4th and 5th in Toronto.  On Friday evening there was a Welcome Reception.  The food was very good and the company was better.  There was such a feeling of relief, to meet and talk to others with similar problems who really could understand very well all of the health issues you might mention, much like this site but in person.
 
The day of lectures and exhibits was Saturday and Dr Ann Parke was the lead off speaker.  She is a noted expert in the field of Sjogren's and a professor at the University of Connecticut School of Medicine.  She gave an overview of the disease.  She said that the current concept is that Sjogren's is a consequence of autoimmune epithelitis that results in the infiltration of lymphocytes into the affected tissues. 
She spoke about the role of hormones and the possibility that Female Androgen Insufficiency plays a role on the disease and also mentioned that some now consider Sjogren's Syndrome to be SLE of the mucous membranes.
 
It is always reassuring to hear Dr. Parke speak.  I feel happier to know that research is going on, though I know that patients have a role to play here also in mobilizing support and raising awareness.
 
The next speaker was Dr Rookya Mather, an opthalmologist from the Ivey Eye Institute in London.  Dry eye was certainly a topic on everyone's mind and she gave us strategies to take control and be proactive as well as everyday tips for home, office and travel.  We all need some stress in our lives but we need to keep it from becoming too much, to try to prevent it before the stress itself is a crisis on its own.
 
She stressed the idea of taking action early when you are not exhausted and getting help and support.  She said that unless you have breast cancer it is wise to take 1000 mg per day of a good fish oil.  Other suggestions:  Limit negative input.  Enjoy today and if you are feeling good offer help to someone else.  Every day write down 5 things you are grateful for.
 
She also mentioned new treatments for the future.  In a response to a question she said that if you use eyedrops more than 4 to 6 times per day you should use a preservative free product.
 
Next was Dr Christine Derzko, an Associate Professor of Obstetrics and Gynecology at Saint Michaels's Hospital, discussing the obstetrical and Gynecological considerations.  I paid less attention to pregnancy and contraception than I did to the sexuality and pain issues as well as menopause and its management.  I loved the idea that estrogens have a natural killer cell function and that progesterone is immunosuppressive.  She told us that vaginal dryness starts in many women in their 40s, before menopause and that long acting KY jelly or a product like Replens may help as well as vaginal estrogen.  She also mentioned the possibility of androgen or testosterone preparations in the future.
 
At this point lunch was the main feature...
 
After lunch Dr Miriam Grushka spoke.  She is a specialist in Oral Medicine and has a particular interest in burning mouth syndrome.  I found out that burning mouth is usually a yeast infection and saw many slides of abnormalities in the mouth and tongue.  I did not know that canker sores are frequent with Sjogren's and I now want to try a chlorhexidine mouthwash.  She mentioned that if the PH of your saliva is below 5.5 you have a greater risk of rampant dental caries.
 
She suggested a product called "Just Gotta Sing" for dry mouth and throat.  Also lemon flavoured Spry mints, Recaldent, MI Paste and GC Tooth Mousse.
 
The final speaker of the day was Ruth Fremes who many know as the co-author of the book "A Body Out of Balance"  She had practical suggestions, like prioritizing your list of questions for the doctor and at the end of her talk quoted Hillel "I get up, I walk, I fall down.  Meanwhile I keep dancing"
 
I am going to try to follow her advice about getting rid of the "should of".  Change it to "I want to..."  The should of feeling leads to guilt which puts you on the path to depression.  Fatigue is also a clue.  It is saying this to you - "You need to rest".
 
She also included a hand out of anti-inflammatory diet tips which I plan to use.
 
So I would say that the Conference was again a resounding success and the time went by too fast.  As i said in the beginning it is great to meet others who share your symptoms.  Ruth also emphasized the benefits of self help groups and this was an in-person experience.  A day that ended too soon as there was a lot more to find out.
 
I did not mention a highlight of the day.  Ten doctors agreed to be available for the roundtable discussions mid-afternoon.  All participants were able to choose their top 3 areas of interest and ask questions.  I got useful information from an optometrist, a rheumatologist, and immunologist, and the dry mouth Dr.
The top exhibitor in my opinion was Renee Chabot-Huculak on behalf of the Niagara Dental Hygenists Association.  She knows so much about dry mouth and dental products that she was talking all day and was the last to leave.  Once we found out that she could tell us our PH level there was almost a line up to try the strip.
 I was also able to get a SonicCare Toothbrush at a dynamite conference special price and found out a lot more about Tranquil Eyes as I was one of the demonstrators.

The date is being set for next year.  Elaine Alexander will speak about Brain Fog,  another speaker will cover Peripheral Neuropathy and depression is also going to be a topic.

Annette