MCTD Resources

MCTD stands for Mixed Connective Tissue Disease.

It is an "overlap" of various autoimmune conditions. 

• My perspective of it is here: http://lupeyloops.blogspot.com.au/2014/10/new-mctd-resource-page.html. 
• 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 Mixed Connective Tissue Disease or that have been useful to me in the past in coming to terms with managing chronic illness. Where there is a resource page dedicated to a specific condition, I have included a link to the resource page only.

The information and resources on these pages have been recommended to me by reputable sources.  I share them here in good faith for the interest of visitors to Lupey Loops.

On this page you will find information about MCTD and related conditions, useful links and resources about related topics such as chronic illness, medication and pain, plus blogs that may interest you. I can certainly relate to many of the opinions expressed in these blogs when it comes to living with a chronic autoimmune condition.

If you have any other useful links to suggest, please contact me at jodiebodiecrochets@gmail.com.

About MCTD

• Mayo Foundation for Medical Education and Research: http://www.mayoclinic.org/diseases-conditions/mixed-connective-tissue-disease/basics/definition/con-20026515
• The Merck Manual: http://www.merckmanuals.com/home/bone_joint_and_muscle_disorders/autoimmune_disorders_of_connective_tissue/mixed_connective_tissue_disease_mctd.html?qt=&sc=&alt=
• Nederlands Vereniging Lupus Erythematodes (NVLE) [Dutch]: http://www.nvle.org/ziektebeelden/mctd.html
• Office of Rare Diseases Research, NIH, USA: http://rarediseases.info.nih.gov/gard/7051/mixed-connective-tissue-disease/resources/1
• Orphanet:  http://www.orpha.net/consor/cgi-bin/OC_Exp.php?lng=EN&Expert=809
• PubMed, NIH, search for articles on MCTD: http://www.ncbi.nlm.nih.gov/pubmed?Db=pubmed&Cmd=DetailsSearch&Term=Mixed+connective+tissue+disease%5Bti%5D+AND+(%222003%2F04%2F23%22%5BPDat%5D+%3A+%222008%2F04%2F20%22%5BPDat%5D+AND+%22humans%22%5BMeSH+Terms%5D)

Related Conditions

Addison's Disease (Hypoadrenalism)

• Australian Addison's Disease Association Inc.,
  PO Box 224 New Lambton NSW  2305   Australia;
  Telephone: 0419 541 591 (+61 419 541 591 outside Australia)
  Email: president@addisons.org.auWeb site: http://www.addisons.org.au/core.htm
• The Merck Manual, "Addison Disease":  http://www.merckmanuals.com/professional/endocrine_and_metabolic_disorders/adrenal_disorders/addison_disease.html?qt=&sc=&alt=
• WebMD, "Understanding Addison's Disease": http://www.webmd.com/a-to-z-guides/understanding-addisons-disease-basics

Arthritis

• Arthritis Australia Resource Links: http://www.arthritisaustralia.com.au/index.php/arthritis-information/resource-links.html
• National Institute of Arthritis and Musculoskeletal and Skin Diseases: http://www.niams.nih.gov/
• "Rheumatoid Arthritis, Lupus and Mixed Connective Tissue Disease (MCTD), Arthritic Chick blog entry, 3 October 2012: http://www.arthriticchick.com/general/rheumatoid-arthritis-lupus-and-mixed-connective-tissue-disease-mctd

Lupus (SLE)

• "Lupus (SLE) Resources", Lupey Loops blog page: http://lupeyloops.blogspot.com.au/p/lupus-information-resources.html
• "Rheumatoid Arthritis, Lupus and Mixed Connective Tissue Disease (MCTD), Arthritic Chick blog entry, 3 October 2012: http://www.arthriticchick.com/general/rheumatoid-arthritis-lupus-and-mixed-connective-tissue-disease-mctd

Raynaud's Phenomenon

• MCTD & Raynauds: http://lupustas.bigpodhosting.com/home/Overlapping_Syndromes.html
• NIAMS Raynauds: http://www.niams.nih.gov/Health_Info/Raynauds_Phenomenon/default.asp

Scleroderma

• "Scleroderma Resources", Lupey Loops blog page:  http://lupeyloops.blogspot.com.au/p/blog-page_6.html

Sjögren's Syndrome

• "Sjögren's Syndrome", Lupey Loops blog page:  http://lupeyloops.blogspot.com.au/p/sj.html

Vasculitis

• Mayo Foundation for Medical Education and Research: http://www.mayoclinic.org/diseases-conditions/vasculitis/basics/definition/con-20026049

Support

I know of few support groups that support sufferers of MCTD specifically.
Support can usually be found through organisations that support sufferers of lupus and scleroderma.
These groups are listed on my other resource pages on Lupey Loops:

• Lupus (SLE) Resources: http://lupeyloops.blogspot.com.au/p/lupus-information-resources.html
• Scleroderma Resources: http://lupeyloops.blogspot.com.au/p/blog-page_6.html
• NVLE (Dutch SLE Society)
• The NVLE specifically names MCTD in its title page. I think it stands for Nederlands Vereniging Lupus Erythematodes which in English is the Dutch Lupus Erythematosus Society: https://www.nvle.org/
• Their website includes a specific page about MCTD with comprehensive information: http://www.nvle.org/ziektebeelden/mctd.html
• NVLE members receive a quarterly newsletter (NVLE Venster) and it has published an article written by Australian MCTD sufferer and blogger Naomi from MCTD–The Truth, The Challenge, The Hope [blog].

Useful Links & Resources

• Australian Rheumatology Association: http://www.rheumatology.org.au/
• Australiasian Cochrane Centre, Monash University: http://acc.cochrane.org/
• Autoimmune Resource & Research Centre (ARRC): http://www.autoimmune.org.au/
• National Institute of Arthritis and Musculoskeletal and Skin Diseases: http://www.niams.nih.gov/
• National Prescribing Service Limited, PO Box 1147, Strawberry Hills NSW 2012, Australia; "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. 
• Orphanet, "The portal for rare diseases and orphan drugs" offers information in French, English, Spanish, German, Italian, Portuguese and Dutch. "Orphanet's aim is to help improve the diagnosis, care and treatment of patients with rare diseases."
  A European consortium of around 40 countries, funded by Inserm (the French National Institute of Health and Medical Research), the French Directorate General for Health, and the European Commission:
  http://www.orpha.net/consor/cgi-bin/Education_AboutOrphanet.php?lng=EN

Diagnostics

• "Autoantibodies" diagnostic tests, Lab Tests Online Au: http://www.labtestsonline.org.au/understanding/analytes/autoantibodies/start/1

Living with Chronic Illness

• But You Don't Look Sick: http://www.butyoudontlooksick.com/
• Lauren Anne, "What It's Really Like to be Chronically Ill", online article, Thought Catalog, web site, 1 August 2014: http://thoughtcatalog.com/lauren-anne/2014/08/what-its-really-like-to-be-chronically-ill/
• 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
• 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
  I love this quote from Stefanie: "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: https://rheumatology.org.au/patients/medication-information.asp
• National Prescribing Service Limited: www.nps.org.au. 
• Orphanet: http://www.orpha.net/consor/cgi-bin/Education_AboutOrphanDrugs.php?lng=EN

Pain

• Chronic Pain Australia:  http://www.chronicpainaustralia.org.au Pain Health:  http://www.painhealth.csse.uwa.edu.auThe 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. 

Blogs 

• Arthritic Chick, blog, Australia:  http://www.arthriticchick.com 
  Arthritic Chick writes about rheumatoid arthritis (RA), mixed connective tissue disease, endometriosis, adenomyosis and other autoimmune conditions from an Australian perspective.  She is a "Creaky Joints" blogger.
• 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"
  
• MCTD–The Truth, The Challenge, The Hope, blog: http://mctd.wordpress.com/
  "An optimistic look at living with mixed connective tissue disease."
• Me vs MCTD, blog: http://mevsmctd.wordpress.com/
  Nicole shares many details about her symptoms, experiences and offers a lot of wisdom about mixed connective tissue disease and management strategies.
• Mademoiselle Michael, blog: http://www.mademoisellemichael.com/
• 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/
• Sarah Wilson: this blog makes life better, sweeter, blog: http://www.sarahwilson.com/
  An Australian blogger shares her insights about health, wellness and life with autoimmune thyroid disease.
• A Day in the Life of The Tube-fed Wife, blog by Chanel White:
  http://www.thetubefedwife.blogspot.com.au/p/welcome.html
  Chanel is in her mid-twenties, diagnosed with Mixed Connective Tissue Disease. Chanel also offers a list of "Spoonie Life Hacks" - resources she finds helpful for anyone living with chronic illness. April 2015 to 2016.
  http://www.thetubefedwife.blogspot.com.au/p/spoonie-life-hacks.html