Scleroderma Definition & Resources

Having trouble explaining scleroderma?  Here are some links to help, and an example of a definition I use.  Here is some help to #EndScleroWhat 

Medical practitioners, patients and those who love patients, often hear “Sclero-What?”, when trying to educate others.

It’s hard to explain scleroderma to someone who has never heard about it using a brief definition.   Here is what I have been using:

“Scleroderma is an autoimmune disease in the same family as Lupus and Rheumatoid Arthritis. Scleroderma is a progressive, degenerative, disease that  attacks connective tissue anywhere in the body, like  skin, internal organs and blood vessels.”

That is just my definition.  I would love to read how you explain scleroderma!  Please leave it in comments-  it may help others.  Mine is not the only definition.

For the best information, please visit one or all of the links below for an even more detailed definition and list of symptoms.

Non-Profit Scleroderma Resources that provide education, support and participate or conduct research.  

Scleroderma Foundation

Scleroderma Research Foundation

Scleroderma Care Foundation of Trinidad and Tobago

Johns Hopkins Scleroderma Center

FESCA

Raynaud’s & Scleroderma, Ireland

Scleroderma Care Foundation, Trinidad & Tobago

Update, June 12, 2014
A few days after I started a Thunderclap, I found Scleroderma Aware, a website where three organizations have joined to raise awareness.  You MUST check it out, and pledge take the pledge to tell someone about scleroderma.  Please visit, and join this great social networking campaign!  

Did you know there are components of scleroderma that can exist as diseases all on their own?  Here are organizations researching and assisting patients. 

Pulmonary Hypertension Association

Pulmonary Fibrosis Foundation

Online Patient Support, closed peer to peer communities.  Free to use.   

Inspire

Treatment Diaries

There are many blog posts that have inspired and motivated me, but none like The Spoon Theory, by Christine Miserandino.  She is a lupus patient and I found her post helpful to describe energy levels with a chronic illness.  Scleroderma is one of many chronic illnessness without a cure.  Reading this opened my eyes to the idea that although no one responds to any crisis the same way, we have a lot in common.  No matter what the diagnosis.  No one blogger, or community has all the answers, but we do have a lot to learn from each other.

The Spoon Theory

Please click the links and follow them on Facebook and/or Twitter.  Learn about scleroderma and share information to help us #EndScleroWhat.  We are in this together and acting together will make us louder.  Let’s make some noise about #scleroderma and share this post!

Thank you in advance!

This post was created for a social network campaign to provide a list of different organizations to accompany a Thunderclap  during scleroderma awareness month.  This page  will be updated to add groups.  No one listed on this page has paid, or made any sort of contribution to be listed here.

Please note:  The Mighty Turtle is not affiliated with any organization but Bounce to a Cure.  All resources are provided void of bias and in no particular order.  

Click to participate in Thunderclap on 6/17/2014