Living The Dream

June 20, 2018June 18, 2018

Scleroderma Awareness Raising 2018: Medical Research Investment

We are now over halfway into our awareness month, culminating with World Scleroderma Day on June 29. As a long-term survivor of our rare disease, it has been very ... Read more

June 6, 2018June 4, 2018

Scleroderma Awareness Month 2018: Unmet Clinical Needs

Columns, Living The Dream

We are nearly a week into June, our annual awareness month, which presents a spotlight opportunity for raising awareness about our rare disease and our day-to-day reality of living ... Read more

May 23, 2018May 22, 2018

Scleroderma Awareness Month: Shining a Spotlight on Our Disease This June

Columns, Living The Dream

June 1 marks the start of Scleroderma Awareness Month, with World Scleroderma Day falling on June 29. This is our opportunity to raise awareness of this rare disease in ... Read more

May 9, 2018May 8, 2018

New Challenges, New Activities

Columns, Living The Dream

Living with a systemic, chronic, degenerative disease without a known cause or cure makes for a diary filled with medical appointments. Symptom management alone is a full-time job. I have ... Read more

April 25, 2018April 24, 2018

Traveling with an Invisible Disability: My 2015 BSR Presentation Experience

Columns, Living The Dream

In a few weeks, the British Society for Rheumatology (BSR) will hold its annual conference. This year, Liverpool is the host city, which is not too far from me ... Read more

April 11, 2018April 10, 2018

Medical Research and Raising Awareness

Columns, Living The Dream

Spring has reluctantly arrived over here in the United Kingdom. An increase in the temperature is most welcome, even if it is only marginal due to my location. To ... Read more

March 28, 2018March 27, 2018

Scleroderma: March Is Autoimmune Disease Awareness Month

Columns, Living The Dream

In an autoimmune disease, the body’s natural defense system, the immune system, malfunctions or “trips out,” resulting in the body attacking itself. The American Autoimmune Related Diseases Association lists over ... Read more

March 14, 2018March 13, 2018

‘Your Skin Cancer Has Cleared’

Columns, Living The Dream

“Your skin cancer has cleared.” 2018 started with a scleroderma-related, potentially life-threatening additional health challenge. A Bowen’s skin patch presented itself on my left knee. Last summer, I recognized the ... Read more

February 28, 2018February 27, 2018

Rare Disease Day 2018: Research

Columns, Living The Dream

Today, Feb. 28, is Rare Disease Day. This year’s theme is “Research.” Living with a rare disease is daunting in every way imaginable. Having been a diffuse scleroderma, rare ... Read more

February 14, 2018February 13, 2018

If Only We Had More Investment in Medical Research

Columns, Living The Dream

Today, Feb. 14, is Valentine’s Day. Scleroderma can affect the heart in various ways. Fibrosis of the heart can be life-threatening, and may contribute to pulmonary arterial hypertension. Upon initial ... Read more

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