Living The Dream - Nicola Whitehill

On July 5, 2018, over here in the United Kingdom, the National Health Service (NHS) celebrated its 70th year since its set-up by then-Health Secretary Aneurin “Nye” Bevan. According to the NHS70 website, “For the first time, hospitals, doctors, nurses, pharmacists, opticians, and dentists were brought together under…

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 exciting for me to see the vibrant 2018 Scleroderma Awareness Month activity, which is taking place…

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 with scleroderma. The theme for this year’s Rare Disease Day — like last year’s — is research, so…

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 all of its guises. We can spend the month fundraising for research or raising…

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 a strict daily routine in place to minimize the severity of my ongoing symptoms. However, as every…

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 in Southport. Sadly, the practicalities of me actually being able to attend, even though the…

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 make it out of winter without a body crisis by way of flare-ups or the like is, quite frankly,…

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 100 different currently identified autoimmune diseases. With the rare…

“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 symptoms and knowing that the medication Efudix cream had…

Today, Feb. 28, is Rare Disease Day. This year’s theme is “Research.” https://sclerodermanews.com/wp-content/uploads/2018/01/NW-rdd-2017-video-research.mp4 Living with a rare disease is daunting in every way imaginable. Having been a diffuse scleroderma, rare disease patient for 21 years, I believe research provides immense hope. Hope that the desperately needed…

  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 examination and diagnosis, the heart should be assessed for any disease activity. Electrocardiogram…

Living with a rare disease that has an unknown cause and no cure is daunting in every way imaginable. For me, managing my scleroderma symptoms, combined with fatigue, mobility challenges, my nutrition and food ingredients is a…