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

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

June 21, 2017June 21, 2017

Week 3 Scleroderma Awareness Month 2017: Patient Profiles, Medical Research, Areas of Current Interest

Columns, Living The Dream

The month of June is Scleroderma Awareness Month, with June 29 being World Scleroderma Day. To further the theme of Rare Disease Day 2017 — “Research, where possibilities are limitless” — ... Read more

June 14, 2017June 14, 2017

Week 2 Scleroderma Awareness Month: Patient Profiles 2017, Progress in Medical Research

Columns, Living The Dream

To further the theme of Rare Disease Day 2017 being “Research, where possibilities are limitless,” I made the focus of my Scleroderma Awareness month campaign, “Research,” while also ... Read more

June 7, 2017June 7, 2017

Scleroderma Awareness Month 2017: Patient Profiles Campaign, Week 1

Columns, Living The Dream

Scleroderma Awareness Month runs through the month of June, with June 29 designated as World Scleroderma Day. On June 1, I launched my Scleroderma Awareness Month 2017 “Patient Profiles” ... Read more

May 31, 2017May 30, 2017

Scleroderma Awareness Month Kicks Off June 1, 2017

Columns, Living The Dream

The first day of June marks the start of Scleroderma Awareness Month, and June 29 is World Scleroderma Day. Further to the theme of this year’s Rare Disease Day ... Read more

May 18, 2017May 18, 2017

June is Scleroderma Awareness Month

Columns, Living The Dream

June is Scleroderma Awareness Month, with June 29 being World Scleroderma Day. Sadly, as patients we all know too well that every day is “scleroderma day.” As such, I want ... Read more

May 3, 2017May 2, 2017

‘Ah, Great, Another Day to Spend in Bed,’ Said No Chronically Ill Patient, Ever

Living The Dream

“Ahh, great, another day to spend in bed.” I’ll bet no chronically ill patient has ever said this. Living with the currently incurable rare diseases scleroderma and Raynaud’s has ... Read more

April 19, 2017April 18, 2017

Managing Symptoms: My Job Today is Simply to Get Better

Columns, Living The Dream

One of my biggest challenges of living with the chronic, incurable, and rare disease scleroderma and Raynaud’s, is that I am no longer physically able to maintain my professional ... Read more

April 5, 2017April 5, 2017

Life as a Raynaud’s, Scleroderma, Rare Disease Patient Advocate

Columns, Living The Dream

Living with a rare disease brings many challenges, along with becoming an expert on your own medical condition. The rare disease patient’s Holy Grail is to actually receive a diagnosis ... Read more