The Australian Sjögren's Syndrome Association | Social service

The Australian Sjögren's Syndrome Association

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23.01.2022 MY CAUSE One of our subscribers has set up a fundraiser for TASSA on My Cause. You can find it here www.mycause.com.au/page/174088 Thanks Alison.

22.01.2022 Please contact them for more details.

22.01.2022 Update on Beverly Bev has been struggling with various health problems over the last year mainly to do with her kidneys and general fitness. Things were so bad recently they thought she may have to go on dialysis but it seems to have stabilised for now. Bev hasn’t been answering any questions in the Comments here or in the FB Group because she finds it too hard to get motivated and focus. As soon as she can get her health back on track she’ll be back posting and commenting again.

22.01.2022 STEM CELL TRIAL TASSA has been contacted by Olympus Stem Cells to recruit Sjogren’s patients to take part in a stem cell trial. All the details from them are below. TASSA is always interested in promoting research but we have no real way of verifying any of the details in this trial and whether you choose to take part is entirely up to you. It is up to everyone to research and enquire at your own risk. The trial costs $15,000 per patient and will be done in Sydney. Explore t...heir website www.olympusstemcells.com.au and make up your own mind - direct any questions you have to them 1300 783 625. If anyone does proceed please let TASSA know. Stem Cell treatment for Keratoconjunctivitis Sicca en.wikipedia.org/wiki/Dry_eye_syndrome/ and Xerostomia https://en.wikipedia.org/wiki/Xerostomia/; Dry Eyes and Dry Mouth surgical treatment As you are aware, there have been case reports in the scientific literature of successful outcomes in both animal and human subjects utilising stem cells for dry eyes and dry mouth. My brother, Associate Professor Russell Vickers, has published in peer reviewed journals his experience in the use of stem cells for facial nerves and facial pain (his CV/ bio is on our website). I am a MaxilloFacial/ Head and Neck Surgeon and used to dealing in facial/head and neck pathology and specifically treating Sjogren’s patients for the last 40 years with a variety of essentially ineffective or part effective topical medications, eg Oral gels, eye drops etc. We have now decided to offer Stem Cell treatment to inject into Lacrimal and Salivary glands in Australia as part of a private clinical trial. We advise that the government will not fund this via Medicare nor the public hospital system as they view Stem Cell treatment as experimental. I can refer you however to continuing private research from USA and Europe where they are undertaking such treatment for their patients. We believe we would be the only group offering this treatment in Australia. We reiterate that Stem Cell treatment is not covered by Medicare nor private health funds and any Sjogren’s patient would be enrolled in a clinical trial. The treatment would encompass at least 2 minor surgical procedures (fat harvesting from the abdomen, done under local anaesthetic as an outpatient and stem cells injected into the glands) in the first year and then probably a yearly review or top up procedure. There are some outpatient tests that we do such as dry eye and dry mouth testing, done at Our Olympus Circular Quay Medical Centre or Olympus Sydney Olympic Park offices. In the first instance we would do a preliminary consultation, then the testing, then the procedure. So it would be at least 3 appointments including the procedure. www.olympusstemcells.com.au

22.01.2022 CAPHOSOL Bev asked me to post this for her. She was sent samples and tried it and found "it may be ok for someone with primary or secondary Sjogrens and someone who can rinse with it more than 4 times a day. Christine said it's good for mouth ulcers as well." But Bev has third stage Sjogren's and so many appointments and home care can't regularly rinse the 10 times a day required to be effective. TASSA suggests you can look into this product or check with your doctor first.... Please note that as Caphosol is used to prevent and treat oral mucositis in patients undergoing treatment for cancer some of the brochures refer to this. A basic summary of Caphosol is: 1. It is a super-saturated calcium and phosphate solution used to prevent and treat dry mouth and oral mucositis. 2. It is VERY important to use it at least 4 times a day, never less, and to increase up to ten times if any symptoms as required or if oral mucositis appears. Once the symptoms improve the frequency can be reduced (but never less than 4 times a day). 3. It is also very important not to eat or drink for at least 15 minutes after using it to ensure the Caphosol is not washed away before it has had time to work. More basic points are: Caphosol is available in a weekly pack (box with 30 calcium vials and 30 phosphate vials). One calcium vial and one phosphate vial are mixed together. Rinse the mouth for one minute with half the solution. Either spit out or swallow. We are not registered to swallow but some patients who swallowed had no ulcers down their throats. It is safe to swallow. Repeat with the remaining half of the solution. Use at least 4 times a day. Do not eat or drink for at least 15 minutes after using. https://www.amsl.com.au/244/oral-mucositis-caphosol

17.01.2022 https://www.youtube.com/watch?v=PSRJfaAYkW4

14.01.2022 TASSA SJOGREN'S FACEBOOK GROUP We now have 564 members for our free Sjogren's Closed Facebook Group attached to this Facebook Page! We launched it in July 2013 for patients and carers and it grew slowly at first - mostly it was Bev giving feedback - and after 5 years it now has a good number of members to give feedback and their experiences. When Bev is well enough she still makes comments to share her insights. Please join the Group (and answer both questions when you join) ...and when you first go to the Group you can look for answers that others may have found by doing a search (with keywords) of all the existing posts and comments using the Search window near the top of the left sidebar. If you still need answers then ask your specific question - or if you have answers you can post info or Comment but please avoid posting actual links and definitely no promotion or affiliate marketing. https://www.facebook.com/groups/sjogrensaustralia See more

13.01.2022 http://nutrilifetips.com/removes-cataracts/

13.01.2022 SODIUM BICARBONATE "A daily dose of baking soda may help reduce the destructive inflammation of autoimmune diseases like rheumatoid arthritis, scientists say. They have some of the first evidence of how the cheap, over-the-counter antacid can encourage our spleen to promote an anti-inflammatory environment that could be therapeutic in the face of inflammatory disease, Medical College of Georgia scientists report in the Journal of Immunology." Read full story in the article. Check with your doctor first. Simple, safe, easy and affordable treatment - worth pondering. https://jagwire.augusta.edu/archives/52953

11.01.2022 I get a lot of questions about the blood test needed to diagnose Sjogren’s. You have to ask your doctor to test for Sjogren’s if they haven't diagnosed it. The test below is one of my test showing positive with Sjogren’s. Bev You can open and save this to your mobile device to show your Dr or print it out and take that to the Dr so they know what tests to order so they can evaluate the results.

08.01.2022 https://the-natural-thyroid-diet.com/the-invisible-thyroid/

06.01.2022 WORKSHEET This Worksheet is useful to keep track of your symptoms with a reference chart showing areas of concern. You can open an A4 high resolution printable version here www.sjogrens.org.au/downloads/worksheet.jpg that you can save and print out and use to take notes over the course of a week. You could keep track at various times of day over a few days. Note sleeping habits. Average sleep patterns.