Living The Dream - Nicola Whitehill

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” campaign. In this column, I hope to provide a résumé of the information shared so far, along with…

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 2017 being “With Research, Possibilities Are Limitless,” I have made research the theme of my Scleroderma Awareness…

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 to highlight the importance of maximizing Scleroderma Awareness Month, and provide some ideas for how you can get involved,…

“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 certainly meant that I have had to spend more time in my bed over the last 19 years…

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 career as a practicing barrister. The last time that I wore my court robes, wig and gown, was June…

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 whereby a treatment care plan then can be put together and, at best, will be focused on symptom…

Today, to tie in with Autoimmune Disease Awareness Month in March, I am going to focus on musculoskeletal symptoms of the condition. Stiff, inflamed, painful joints and muscles are hallmarks of a range of autoimmune diseases, with arthritis the most prevalent and commonly known, and diffuse scleroderma mimicking it.

As March is Autoimmune Disease Awareness Month, today I am going to focus on the autoimmune diseases and discuss the similarities in clinical unmet needs between some of the diagnoses. While it is widely known that an autoimmune disease is one in which the immune response starts to attack healthy tissues,…

Less than a week remains until Rare Disease Day (Feb. 28), the theme for which this year is research. In this column I discuss some of the many current unmet research needs of systemic scleroderma and Raynaud’s patients. Clearly, a cure, combined with understanding of the disease cause,…

https://sclerodermanews.com/wp-content/uploads/videos/nicola_blog.mp4 The theme for this year’s Rare Disease Day on Feb. 28 is “Research,” which is a most-welcome topic to Raynaud’s and scleroderma patients across the globe. Investment in medical research provides immense hope and some comfort to the rare disease patient living with a currently…

https://sclerodermanews.com/wp-content/uploads/videos/nicola-vlog.mp4 Here in the northern hemisphere we are in the midst of winter. In an attempt to minimize my Raynaud’s symptoms, hibernation began in October. This entails being under house arrest, unless I really need to go out. Such “special days” out are reserved for medical appointments…

Every scleroderma patient presents with differing symptoms. Diffuse/systemic scleroderma affects the entire body, making the need for a multi-disciplinary medical team paramount to ensure optimum patient care. Attending and preparing for medical appointments is a full-time job, even when the symptoms have stabilized. In the U.K. we are…