Sjögren's Syndrome is a part of my autoimmune picture. The story of my diagnosis is here: http://lupeyloops.blogspot.com.au/2013/01/diagnostic-hoops.html
World Sjögren's Day is 23 July and I blogged about it here:
http://lupeyloops.blogspot.com.au/2014/07/world-sjogrens-day.html
This page is a gathering place for all of the links and resources that have useful information about Sjögren's Syndrome or that have been useful to me in the past in coming to terms with managing chronic illness.
The information and resources on this page have been recommended to me by reputable sources. I share them here in good faith for the interest of visitors to Lupey Loops.
If you have any other useful links to add, please contact me at jodiebodiecrochets@gmail.com.
What is Sjögren's Syndrome?
- http://www.arthritisaustralia.com.au/images/stories/documents/info_sheets/2013/SjogrensSyndrome.pdf This is a basic fact sheet with general information.
- http://lupustas.bigpondhosting.com/home/Sjogrens_Syndrome.html
This Tasmanian web page details the bodily systems which may be affected by Sjögren's Syndrome, the symptoms, diagnostic tests and treatment options.
- http://www.niams.nih.gov/Health_Info/Sjogrens_Syndrome/default.asp
This website from the USA is comprehensive. It discusses the causes and prevalence of Sjögren's Syndrome, plus additional information about current research with links to other resources. Any question you may have about SS, the answer is likely to be here.
Sjögren's Syndrome Organisations & Support Groups
in Australia
Arthritis Australia: http://www.arthritisaustralia.com.au/
New South Wales
The Australian Sjögren's Syndrome Association (TASSA)
39 Main Arm Road, Mullumbimby NSW 2482
Phone: (02) 6684 3704
Email: bevnorton@sjogrens.org.au
Website: http://www.sjogrens.org.au
Facebook page: https://www.facebook.com/SjogrensAustralia/info
Lupus Association of NSW Inc.
55 Wicks Road, North Ryde NSW 2113
PO Box 89, North Ryde NSW 1670
Phone: (02) 9878 6055
Freecall: 1800 802 088 (NSW Country & Interstate)
Website: lupusnsw.org.au
Northern Territory
Arthritis and Osteoporosis NT
PO Box 452
Nightcliff NT 0814
South Australia
Lupus/Scleroderma/Sjögren's SA
A Branch of the Arthritis Foundation of SA Inc.
Email: Lss.sa.group@gmail.com
Website: arthritissa.org.au
Facebook page 'Lupus, Scleroderma, Sjögren's Support - South Australia': https://www.facebook.com/supportlss
Arthritis Foundation of SA Inc. (Arthritis SA)
118 Richmond Road, Marleston SA 5033
Freecall: 1800 011 041 (Country)
Phone: (08) 8379 5711
Fax: (08) 8379 5707
Email: info@arthritissa.org.au
Website: arthritissa.org.au
Tasmania
Lupus Association of Tasmania Inc.
PO Box 639, Launceston TAS 7250
Phone: (03) 6431 6042
Website: lupustas.bigpondhosting.com/home/Welcome.html
Useful links: http://lupustas.bigpondhosting.com/home/Useful_Links.html
Victoria
Arthritis Foundation of Victoria (Arthritis Victoria)
263 Kooyong Road Elsternwick 3185
PO Box 130, Caulfield South VIC 3162
Telephone: (03) 8531 8000
Toll free: 1800 011 041
Fax: (03) 9530 0228
Email: afv@arthritisvic.org.au
Website: arthritisvic.org.au/
Useful links: http://www.arthritisvic.org.au/Useful-Information/Links
Arthritis Victoria has changed its website name and location. It is now Move: muscle, bone & joint health.
This website used to be based at arthritisvic.org.au/ which was very comprehensive and provided information in many languages listed here:
http://www.arthritisaustralia.com.au/index.php/arthritis-information/information-sheets.html
Arabic
Chinese (Cantonese)
Croatian
Greek
Italian
Korean
Macedonian
Persian
Spanish
Vietnamese
An Interpreter Service is also available.
Sjögren's Syndrome Organisations Worldwide
Arthritis Society Canada: http://www.arthritis.ca/
Ireland
Arthritis Ireland: http://www.arthritisireland.ie/
The Netherlands
Lupus Patiënten Groep: lupuspatientengroep.nl
Nationale Vereniging LE Patienten: nvle.org
New Zealand
Arthritis New Zealand: http://www.arthritis.org.nz/
United Kingdom
The Lupus Site (UK): http://www.uklupus.co.uk/
USA
Sjögren's Syndrome Foundation: http://www.sjogrens.org/index.php
Arthritis Foundation: http://www.arthritis.org/
Lupus Foundation: www.lupus-sle.org
Email: info@lupus-sle.org
Other Useful Links
Arthritis Australia Resource Links: http://www.arthritisaustralia.com.au/index.php/arthritis-information/resource-links.html
Australian Rheumatology Association: http://www.rheumatology.org.au/
Autoimmune Resource & Research Centre (ARRC): http://www.autoimmune.org.au/
National Institute of Arthritis and Musculoskeletal and Skin Diseases: http://www.niams.nih.gov/
Brain Fog
"Brain Fog: Is It Sjögren's Syndrome?" (source: Lupus Australia Queensland): <http://lupus.com.au/index.php?option=com_content&view=article&id=7:brain-fog&catid=7:brain&Itemid=10>
I found this article extremely interesting because I suffer from brain fog. It was the last straw and critical reason for leaving my proofreading and editing job. When affected, I will often have trouble "getting my words together". This is a symptom that panicked me because "words were my livelihood". Another reason for starting the blog is to keep my brain active and practice my language skills.
Living with Chronic Illness
But You Don't Look Sick: http://www.butyoudontlooksick.com/
Living with Sjögren's Syndrome, Sjögren's Syndrome Foundation (USA): http://www.sjogrens.org/home/about-sjogrens-syndrome/living-with-sjogrens
Parenting with chronic illness: http://theoriginaldragonmother.blogspot.com.au/2014/05/parenting-when-you-have-chronic-illness.html
Living Well with Sjögren's Syndrome, Arthritis Victoria: http://www.arthritisvic.org.au/Conditions-and-Symptoms/Sjogrens-Syndrome/Living-Well
Lorig, Holman, Sobel, Laurent, Gonzalez, Minor et al, Living a Healthy Life with Chronic Conditions: self management of heart disease, arthritis, stroke, diabetes, asthma, bronchitis, emphysema and others, ISBN: 0-923521-28-3, Bull Publishing, Palo Alto CA, USA, 1994.
O'Rourke, Meghan, "What's Wrong with Me? I had an autoimmune disease. Then the disease had me." online article, The New Yorker, 26 August 2013: http://www.newyorker.com/magazine/2013/08/26/whats-wrong-with-me
The Pillow Fort, magazine and blog: http://www.thepillowfort.co.uk/
"An exclusive group for positive, young people who just happen to have chronic illness." The magazine published 5 issues and will close on 31 Dec 2014. Back issues are not available from 1 Jan 2015: http://thepillowfort.co.uk/2014/11/magazinehiatus/
The Pillow Fort, magazine and blog, "Why Don't You Just Know How to Help Me?", online article with free printable resource, 6 August 2014: http://thepillowfort.co.uk/2014/08/dont-just-know-help-free-printable/
Medication
Medicine Information Sheets, Australian Rheumatology Association: https://rheumatology.org.au/patients/medication-information.asp
More Than Medication: https://www.morethanmedication.com.au/
National Prescribing Service Limited, "an independent, non-profit organisation for 'Quality Use of Medicines' funded by the Australian Government Department of Health and Ageing, provides practical tools and information about medicines, health conditions and medical tests"; www.nps.org.au.
PO Box 1147, Strawberry Hills NSW 2012, Australia.
- Medicines Line: 1300 888 763 (within Australia)
- Medicines List (paper, PDF, smartphone app or eList): http://www.nps.org.au/topics/how-to-be-medicinewise/managing-your-medicines/medicines-list/medicines-list-paper
Pain
Chronic Pain Australia: http://www.chronicpainaustralia.org.au
Pain Health: http://www.painhealth.csse.uwa.edu.au
The Pain Relief Foundation, Clinical Sciences Centre, University Hospital Aintree, Lower Lane, Liverpool, L9 7AL, UK: http://www.painrelieffoundation.org.uk/
Joint pain: https://www.myjointpain.org.au
Lynn, Tea, "16 Things People in Chronic Pain Want You to Know", online article, The Pain Relief Foundation, 2 April 2014: http://www.thepainrelieffoundation.com/patient-perspectives/want-you-to-know/
This article was suggested to me by a fellow pain sufferer and is listed here as a useful resource.
I am cautious about the repute of the publisher as it asks for donations (on this web site and Facebok page) yet nowhere does it stipulate where it is based or how it is funded, who owns it etc. The organisation claims that "… we are just getting started and hope to be up by April 2015!"
All I can suggest is 'watch that space' for further information.
There is a "Pain Relief Foundation" in the UK which is supported by drug company Pfizer.
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