Scleroderma Resources

Scleroderma symptoms are a part of my autoimmune picture. The story of my diagnosis is here: http://lupeyloops.blogspot.com.au/2013/01/diagnostic-hoops.html
My post about World Scleroderma Day describes how scleroderma affects me.

This page is a gathering place for all of the links and resources that have useful information about scleroderma 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 scleroderma 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 (so I am not going to try).  My aim is to make this page a starting point for learning more about scleroderma.



What is Scleroderma?



Australian Scleroderma Organisations & Support Groups


Scleroderma Australia Inc.
C/- St. Vincent's Hospital, 47 Victoria Parade, Fitzroy VIC 3065 
Email: enq@sclerodermaaustralia.com.au
Website: http://www.sclerodermaaustralia.com.au
Facebook page (closed group): https://www.facebook.com/SclerodermaAustralia/info
Newsletter: Sclero Aust News Web: http://www.sclerodermaaustralia.com.au/80-newsletter/117-sclero-aust-news-web



Australian Capital Territory

Scleroderma Group of the ACT
The Scleroderma Association of NSW Inc. provides support for those living in the ACT. Please see the listing for New South Wales for details.


New South Wales

Scleroderma Association of NSW Inc.
PO Box 227, Ashfield NSW 1800
Telephone: 02 9798 7351
Email: sclerodermansw@tpg.com.au
Website: http://www.sclerodermansw.org/


Northern Territory

The Scleroderma Association of Queensland Inc. provides support for those living in the Northern Territory. Please see the listing for Queensland for details. 

Arthritis and Osteoporosis NT
PO Box 452
Nightcliff  NT 0814

Queensland
The Scleroderma Association of Queensland Inc.
PO Box 316, Salisbury QLD 4107
Telephone: 07 3277 3460
Fax: 07 3277 3460
Email: sclero@pacific.net.au
Website: http://www.scleroderma.org.au/
This group advises that this website is not being managed at 8 December 2016 and refers visitors to the Scleroderma Australia website: http://www.sclerodermaaustralia.com.au/


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


Victoria

Scleroderma Victoria
St Vincent's Hospital, 41 Victoria Parade, Fitzroy VIC 3065
Telephone: 03 9288 3651
Email: enq@sclerodermavictoria.com.au
Website: http://www.sclerodermavictoria.com.au/


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: 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.

Tasmania

Scleroderma Victoria provides support for those living in Tasmania. Please see the listing for Victoria for details.

Western Australia

Arthritis Foundation of WA
17 Lemnos Street, Shenton Park WA 6008
Telephone: 08 9388 2199
Email: general@arthritiswa.org.au
Website: http://www.arthritiswa.org.au/



Scleroderma Organisations Worldwide


FESCA, Federation of European Scleroderma Associations: http://www.fesca-scleroderma.eu/wordpress/


Belgium (Dutch)
CIB-Liga, Chronische Inflammatoire Bindweefselziekten: http://www.cibliga.be/

Belgium (French)
Association des Patients Sclérodermiques de Belgique: http://www.sclerodermie.be/

Canada
The Scleroderma Society of Canada: http://www.scleroderma.ca/

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

Germany
Sklerodermie Selbsthilfe e.V.: http://www.sklerodermie-selbsthilfe.de/

Ireland
Irish Raynaud's & Scleroderma Society: http://www.irishraynauds.com/
This website was temporarily unavailable at 6 December 2016.

Arthritis Ireland: http://www.arthritisireland.ie/

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

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

Spain
Asociacion Española Esclerodermia (Spanish Scleroderma Association): http://www.esclerodermia.org/scleroderma/

United Kingdom
Scleroderma & Raynaud's UK: https://www.sruk.co.uk/
This organisation was formed by the merger of the Raynaud's & Scleroderma Association (RSA) and the Scleroderma Society.

USA
Scleroderma Foundation: http://www.scleroderma.org/site/PageServer#.U6EZS5SSxLc

International Scleroderma Network: http://www.sclero.org/

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

Eczema Association of Australasia Inc.: http://www.eczema.org.au/


National Institute of Arthritis and Musculoskeletal and Skin Diseases: http://www.niams.nih.gov/

Pulmonary Hypertension Association Australia: http://www.phaaustralia.com.au/
Email: admin@phaaustralia.com.au

Scleroderma Australia Inc., Helpful Tips When Having Blood Taken: Scleroderma Patients, brochure, download link: http://www.sclerodermaaustralia.com.au/27-publications/112-blood-taking-tips



Managing & Living with Chronic Illness

Arthritis Foundation of Victoria, "Living Well" web page: http://www.move.org.au/Conditions-and-Symptoms/Scleroderma/Living-Well

Scleroderma Foundation (USA), "Coping with Scleroderma" web page: http://www.scleroderma.org/site/PageServer?pagename=patients_coping#.U6EbmJSSxLc

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 When You Have Chronic Illness, blog: 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 closed on 31 Dec 2014. Back issues are not available from 1 Jan 2015: http://thepillowfort.co.uk/2014/11/magazinehiatus/
The website is promoting the magazine in 2016 in PDF: http://thepillowfort.co.uk/magazine/

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, 17 September 2014: http://kindofbroken.blogspot.com.au/2014/09/authenticity.html 
"People think we fake being sick but we're actually working incredibly hard to fake being well ." 

White, Chanel, "What It is Actually Like to be Chronically Ill", online article, Huffington Post, 7 January 2015: http://www.huffingtonpost.com/chanel-white/what-it-is-actually-like-to-be-chronically-ill_b_7717526.html?fb_action_ids=10153368409585351&fb_action_types=og.likes&ir=Australia 
"Chronic illness is a full time job with no pay, no vacation and no weekends. Every day is a sick day - but you still have to work...This notion of "free time" doesn't actually exist for the chronically ill. When not exhausted on the couch you're in a waiting room at one of your eight appointments a week ... or sitting in an infusion room chair getting your chemo, iron, or saline infusions."



Medication

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

More Than Medication (drug company website): 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
"A help web site for musculoskeletal pain."

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

Moore, Tea Lynn, "16 Things People in Chronic Pain Want You to Know", online article, The Pain Relief Foundation, 2 April 2014, USA: 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. The author is a University of Toronto student researcher and professional patient due to Ehlers-Danlos Syndrome and related conditions (Craniocervical Instability, Trigeminal Neuralgia, CRPS, Dysautonomia, Gastroparesis, CSA...)



Research, News & Further Reading


Azevido, Margarida, "Systemic Sclerosis Disease Activity Seen to Correlate with Vitamin D Deficiency, online article 14 January 2016: http://sclerodermanews.com/2016/01/14/systemic-sclerosis-disease-activity-seen-correlate-vitamin-d-deficiency/
"Two-year study found more diffuse SSc patients had poor vitamin levels than those with limited disease." 

Medical Xpress, "New way of classifying scleroderma", online press release about Patterson et. al.'s research paper (listed below), 1 December 2015: http://medicalxpress.com/news/2015-12-scleroderma.html

Medical Xpress, "Updated systemic sclerosis criteria improve disease classification", online article, 3 October 2013: http://medicalxpress.com/news/2013-10-sclerosis-criteria-disease-classification.html

Patterson, K.A. et al., "Interpretation of an Extended Autoantibody Profile in a Well-Characterized Australian Systemic Sclerosis (Scleroderma) Cohort Using Principal Components Analysis", Arthritis & Rheumatology [journal], Volume 67, Issue 12, pages 3234–3244, December 2015, American College of Rheumatology; first published online 25 November 2015. Abstract: http://onlinelibrary.wiley.com/doi/10.1002/art.39316/abstract
Authors: K. A. Patterson, P. J. Roberts-Thomson, S. Lester, J. A. Tan, P. Hakendorf, M. Rischmueller, J. Zochling, J. Sahhar, P. Nash, J. Roddy, C. Hill, M. Nikpour, W. Stevens, S. M. Proudman and J. G. Walker.
"Five major autoantibody clusters with specific clinical and serologic associations were identified in Australian SSc patients. Subclassification and disease stratification using autoantibodies may have clinical utility, particularly in early disease."


Scleroderma News Today, BioNews Services LLC, Dallas TX, USA: http://sclerodermanews.com/

Semedo, Daniela, "Scleroderma Researchers ID New, ‘Personalized’ Way of Classifying Disease: Approach using patient's autoantibodies may lead to better diagnosis and improved therapies" [online article], Scleroderma News Today, 10 December 2015: http://sclerodermanews.com/2015/12/10/scleroderma-researchers-id-new-personalized-way-classifying-disease/
A layperson's explanation of the Patterson et al. research (listed above) conducted from Flinders University in South Australia.

van den Hoogen, F., Khanna, D et al.,  "2013 Classification Criteria for Systemic Sclerosis. An American College of Rheumatology and European League Against Rheumatism Collaborative Initiative", Arthritis & Rheumatism [journal] November 2013, Vol. 65, No. 11, pp.2737–2747, published online: 3 October, 2013. DOI: 10.1002/art.38098: http://dx.doi.org/10.1002/art.38098This article is published simultaneously in the November 2013 issue of Annals of the Rheumatic Diseases.


Blogs & Informal Support Networks

Polka Dots for Peppa, Facebook community web page, 8 December 2016: https://www.facebook.com/polkadotsforpeppa/
Peppa's previous scleroderma Facebook page is now unavailable. It was formerly known as:
Peppa has Scleroderma, Facebook community web page, 12 April 2015: https://www.facebook.com/Peppahasscleroderma?fref=ts
This web page may be of special interest to younger scleroderma sufferers. Peppa describes her condition as "… stuck in a 60 year olds body at age 14 … the worst form of scleroderma and end stage renal failure at my age". Peppa would like us to "… please share around with your friends and raise more awareness about scleroderma!"

A Day in the Life of The Tube-fed Wife, blog by Chanel White:
http://thetubefedwife.blogspot.com.au/p/welcome.html
Chanel is in her mid-twenties, diagnosed with Mixed Connective Tissue Disease, which features "symptoms of multiple diseases, the most predominant being; Scleroderma (Systemic Sclerosis) and Systemic Lupus Erythematosus (Lupus)." April 2015 to 2016.

Kind of Broken: lifestyles of the young, sick and fabulous, blog by Stefanie Shea: http://kindofbroken.blogspot.com "The struggles and triumphs of living with POTS (Postural Orthostatic Tachycardia Syndrome), Dysautonomia, and other flavors of chronic illness"


Related Posts on Lupey Loops


General search for blog entries tagged with 'scleroderma': http://lupeyloops.blogspot.com.au/search/label/scleroderma

The 'R-word', 22 April 2016: http://lupeyloops.blogspot.com.au/2016/04/the-r-word.html

Getting My Head Around It, 13 August 2015: http://lupeyloops.blogspot.com.au/2015/08/getting-my-head-around-it.html

World Scleroderma Day, 29 June 2014:
http://lupeyloops.blogspot.com.au/2014/06/world-scleroderma-day.html


MCTD - Mandatory Crochet Therapy Daily, 13 February 2014:
http://lupeyloops.blogspot.com.au/2014/02/mctd-mandatory-crochet-therapy-daily.html

Discusses crochet as a preventative therapy and how it can be beneficial for sufferers of scleroderma.

Downtime, 20 December 2013:
http://lupeyloops.blogspot.com.au/2013/12/downtime.html
Describes the effects of scleroderma on my hands and arms.



Page last updated: 8 December 2016.

2 comments:

  1. Dear JodieBodie,

    You send my some nice comments on my blog so I checked out yours. I was surprised/shocked to see you have Scleroderma. I know the illness because my grandmother died of scleroderma. I never got the change to get to know her because she died a long time ago! I can't imagine how it feels like to have such an illness. I just wanted to share this with you. I have a big respect for you and you have a new follower now :-).

    Lovely greetings from Emily
    (casacreaemilia.blogspot.nl)

    ReplyDelete
  2. G'day Emily,

    Thank you for coming to visit Lupey Loops. I am so sorry that you lost your grandmother to scleroderma. That is very sad because scleroderma in its severe forms can be very cruel. It is sad that you did not have as much time with your grandmother to get to know her as you would like. [HUGS to you!] Thank you for sharing your story with me. I am touched. Thank you also for your kind words.

    I enjoy your photos of the Dutch scenery on your blog; e.g. the beach at Zandvoort. It reminds me of my summer in the Netherlands; happy memories. I tell my family about it and now I can show them your photos.

    I love your energy and your cute projects and that you share it all online. Make the most of this time while you are young. I don't get out as much as I would like to any more due to illness, but when I visit your blog, it keeps me young in spirit. I wish some of your energy would rub off on me!

    Wat leuk om een nieuwe blog vriendin to hebben! :-)

    Best wishes
    Jodie

    PS Feel free to correct my grammar! I am sure you know what I am trying to say ;-)

    ReplyDelete