Lupus (SLE) Resources

Lupus, also known as SLE - systemic lupus erythematosus  - is a part of my autoimmune picture. The story of my diagnosis is here: <http://lupeyloops.blogspot.com.au/2013/01/diagnostic-hoops.html>

This page is a gathering place for all of the links and resources that have useful information about lupus 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.

I am not going to describe lupus in detail on this page as that is done very well by the websites in this list.

At the time of writing, this page is a work-in-progress (and is likely to remain so).  It is a big job to include everything and I suspect an impossible one too.  My aim is to make this page a starting point for learning more about lupus.


What is Lupus?





Australian Lupus Support Groups


New South Wales

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)
Email: info@lupusnsw.org.au
Website: lupusnsw.org.au

Queensland

Lupus Australia Queensland Inc.
PO Box 974, Kenmore QLD 4069
Phone: (07) 38789553
Fax: (07) 38789557
Website: lupus.com.au/
Resources: http://lupus.com.au/index.php?option=com_sectionex&view=category&id=2&Itemid=7


South Australia

Lupus/Scleroderma/Sjogren'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, Sjogren'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
Email: lupustas@bigpond.net.au
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
National Helpline: 1800 263 265
Fax: (03) 9530 0228
Email: helpline@move.org.au
Website: http://www.move.org.au/Home
Useful links: http://www.move.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.

Lupus Foundation
Email: info@lupus-sle.org
Website: www.lupus-sle.org
Facebook page: https://www.facebook.com/LupusSLE.Australia


Western Australia

Lupus Group of Western Australia (Inc.)
Level 3, N Block, Royal Perth Hospital, Murray Street, Perth
Office Hours: Monday and Wednesday 09.30 - 11.30am subject to availability
Postal Address: c/- Royal Perth Hospital, GPO Box X2213, Perth WA 6847
Phone/fax: (08) 9224 3144 (leave a message)
Email: admin@lupuswa.com.au
Website:  lupuswa.com.
Useful links: http://www.lupuswa.com.au/content/page/links.html
Facebook page: https://www.facebook.com/groups/Lupus.Support.Western.Australia/?fref=ts


Lupus Organisations Worldwide


International Resources (Lupus Foundation of America): http://www.lupus.org/resources/international-resources

Canada
Arthritis Society Canada: http://www.arthritis.ca/

Ireland

The Netherlands
N.V.L.E. Patient Organisation for lupus, scleroderma & MCTD
Nationale Vereniging LE Patienten: https://www.nvle.org/

Lupus Patiënten Groep: lupuspatientengroep.nl
This web page is no longer in use. ("De domeinnaam lupuspatientengroep.nl is geveild op DomainOrder.nl en daarna succesvol geregistreerd voor de hoogste bieder in onze veiling.")


New Zealand
Arthritis New Zealand: http://www.arthritis.org.nz/

United Kingdom
The Lupus Site (UK):  http://www.uklupus.co.uk/
This site redirects to: http://www.thelupussite.com/

USA
Lupus Foundation of America: http://www.lupus.org
National Resource Center on Lupus, Lupus Foundation of America: http://www.resources.lupus.org/

Lupus Research Alliance, formerly S.L.E. Lupus Foundation: http://www.lupusny.org/about 

Arthritis Foundation: http://www.arthritis.org/


Other Useful Links


Arthritic Chick, "Rheumatoid Arthritis, Lupus and Mixed Connective Tissue Disease (MCTD)", blog entry, 3 October 2012: http://www.arthriticchick.com/general/rheumatoid-arthritis-lupus-and-mixed-connective-tissue-disease-mctd  

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/

The John Hopkins Lupus Center, John Hopkins School of Medicine, USA: http://www.hopkinslupus.org/



Chronic Illness

Arthritic Chick, Australian blog: http://www.arthriticchick.com

But You Don't Look Sick: http://www.butyoudontlooksick.com/

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

Parenting with chronic illness: http://theoriginaldragonmother.blogspot.com.au/2014/05/parenting-when-you-have-chronic-illness.html

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, "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/

Shea, Stefanie, "Why I Lived a Double Life While Dealing with my Chronic Illness", online article, The Mighty newsletter, 18 August 2015: http://themighty.com/2015/08/why-i-lived-a-double-life-while-dealing-with-my-chronic-illnesses/ 
This article is taken from an original post, "Authenticity", on Stefanie Shea's blog, Kind of Broken: lifestyles of the young, sick and fabulous, 17 September 2014: http://kindofbroken.blogspot.com.au/2014/09/authenticity.html
Quote from Stefanie: "People think we fake being sick but we're actually working incredibly hard to fake being well ." 

Medication

Medicine Information Sheets, Australian Rheumatology Association: http://www.rheumatology.org.au/community/PatientMedicineInformation.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.



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 is listed here as a useful resource that was suggested to me by a fellow pain sufferer.   
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.


Research & News

Lupus News Today, BioNews Services LLC, Dallas TX, USA: http://lupusnewstoday.com/


Lupus (SLE) Resources page last updated May 2017