Columns

July 25, 2017July 25, 2017

The Surprising (and Reassuring) Effect Chronic Illness Has on My Friendships

Columns, Scleroderma and the Ordinary Girl

When I was in my 20s I was one of the very first people go bungee jumping here in New Zealand, when AJ Hackett operated from a tiny caravan set up ... Read more

July 20, 2017July 20, 2017

Why Are Scleroderma Patients so Stubborn?

Columns, Through Teal Colored Glasses - a Column by Jessica Massengale

A kaleidoscope of thoughts pass through our minds every second of the day. The unpredictable nature of a disease can change the way we think, rewiring our emotions and ... Read more

July 18, 2017July 18, 2017

Identifying the Thief That is Stealing My Life

Columns, Scleroderma and the Ordinary Girl

Until writing this particular column, there had been an aspect of scleroderma that I still had not managed to come to any place of peace with since my diagnosis ... Read more

July 13, 2017July 13, 2017

The Good, Bad, and Ugly of Coping Through Social Media

Columns, Through Teal Colored Glasses - a Column by Jessica Massengale

Facebook recently announced it has reached 2 billion monthly users worldwide. This means that a quarter of the world is using Facebook. Social media has become one of the main platforms ... Read more

July 12, 2017July 12, 2017

Flashback: Scleroderma Awareness Month 2017

Columns, Living The Dream

Last month was Scleroderma Awareness Month, with June 29 being World Scleroderma Day. And, WOW, what a busy month it was for raising awareness of our multi-complex, rare disease! ... Read more

July 11, 2017July 10, 2017

Advocate for Yourself as a Patient, Because You’re Worth It

Columns, Scleroderma and the Ordinary Girl

In the hospital last year after major surgery, I was unable to do much without assistance from my nurse. As a scleroderma patient who suffers from Raynaud’s disease, it ... Read more

July 6, 2017July 5, 2017

What Makes Scleroderma Patients Such Strong People?

Columns, Scleroderma and the Ordinary Girl

Naturally, I am in contact with many people who have scleroderma, because I also have systemic scleroderma. I connect with other patients either through social media networks online or in person. Some ... Read more

June 29, 2017June 29, 2017

Let’s Imagine: Scleroderma Unawareness Day

Columns, Comfortable in My Thick Skin

When I was a kid, my friends and I loved to look at one another and spout with cruelty, “I hate you!” Just when it looked as though someone ... Read more

June 29, 2017June 29, 2017

Phaware Podcast: Bob Saget

Aware That I'm Rare - a Podcast Series by phaware, Columns

This podcast, created and produced by phaware, features acclaimed media personality Bob Saget, a Scleroderma Research Foundation board member. It is being offered today on Scleroderma News in honor of World Scleroderma Day. You may ... Read more

June 28, 2017June 28, 2017

World Scleroderma Day 2017: Let’s Raise Awareness

Columns, Living The Dream

World Scleroderma Day, June 29, 2017 Wehoo, Thursday, June 29, is World Scleroderma Day. This is our opportunity to showcase the rare disease scleroderma to the world to raise ... Read more