Living The Dream - Nicola Whitehill

2018 is looking to be a very busy and exciting year for scleroderma patients. Before I discuss some of the many events scheduled for the year: Thank you to those who contacted me during my time away from my column. I am slowly recovering from post-traumatic…

Invisible Disabilities Week, Oct. 15-21, started Sunday, combining with the ongoing October Raynaud’s Awareness Month campaign. It made this a very busy week for our global patient community with awareness-raising opportunities. I have detailed my Raynaud’s reality, highlighting the immense…

Sunday, Oct. 1, was the start of #RaynaudsAwarenessMonth 2017. As scleroderma patients, we know all too well how debilitating and painful the symptoms of Raynaud’s can be. In addition, the symptom control of the added extras, caused by a lack of blood supply in the scleroderma patient, include…

Here in the United Kingdom, summer is gradually transforming into autumn. The decrease in temperature can be seen by the change of color in the leaves, as well as a change in color to my fingers and toes. Even on a hot summer’s day, I struggle to maintain…

“You should get out more.” These words of advice were recently given to me by a friend, a non-scleroderma patient. I am sure this friend  meant well. But on the cusp of my 20-year anniversary since my initial diagnosis, I…

In a few weeks, it will be my 20th anniversary of first hearing those life-changing words: “You have scleroderma,” followed by, “and Raynaud’s phenomenon. There is no cure. Your disease is so aggressive that you are looking at 15 months, maximum. Forget being a barrister.” I have written about…

Those life-changing words “you have scleroderma” followed by “and Raynaud’s phenomenon” often are met with relief, paradoxically, due to finally having an explanation as to what is happening to your body. And then, within seconds, the reality hits of what those words actually mean and what the…

Those three words — “You have scleroderma” — followed by — “and Raynaud’s” — have without doubt life-changing, if not life-threatening, consequences. In this column, I discuss the day-to-day impact these three words have, and the lifestyle adjustments and changes required to respect symptoms. Paradoxically, hearing those…

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! In this column, I discuss the importance of raising awareness, along with the results…

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 awareness — whether it be for fundraising purposes, for investment in research for that oh-so-desired cause and…

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” — the focus of my Scleroderma Awareness Month campaign is “Research,” while also focusing on patient profiles from various countries, highlighting…

  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 focusing on unmet patient clinical needs. By giving the campaign a global approach I hope that an improved…