Living The Dream

I survived the holidays! As fellow patients living with chronic, degenerative, rare diseases know all too well, there is no holiday from our daily myriad symptoms. The holidays can be isolating and difficult, as sometimes I am physically unable to join festivities. I am hypervigilant about…

The festive holiday season is here. To mark the occasion, check out my little “dream team” Christmas jumper video. Christmas jumper day. (All photos courtesy of Nicole Whitehill) As patients living with a chronic, debilitating, and rare autoimmune disease, we know all too well…

This week, I am celebrating my 20th year since first dragging my “tin-man” body to the Scleroderma Unit at the Royal Free Hospital in London. September 2017. (Courtesy of Nicola Whitehill) The previous year, at the time of my initial diagnosis in September 1997,…

At the start of December, I will be celebrating my 20th year since first dragging my “tin-man” body to the Scleroderma Unit at the Royal Free Hospital in London. September 2017. (Courtesy of Nicola Whitehill) The previous year, at the time of my…

The skin is the largest organ in the body and is affected in most scleroderma patients. At the time of my diffuse scleroderma diagnosis in 1997, I had extremely tight skin across my chest, arms, hands, face, legs — all over my body. My…

Invisible Disabilities Week took place from Oct. 14-20. The Invisible Disabilities Association explains how those with invisible disabilities can be misunderstood: “People often ask us to define invisible disability. To define invisible disability in simple terms is a physical, mental or neurological condition that…

October is Raynaud’s Awareness Month. It is also the month when the beautiful autumnal shades over here in the U.K. remind me that my winter “full-time hibernation” is looming. My 50 shades of blue “party trick,” where my hands and feet change color…

Here in the U.K., autumn has arrived. The color changes of the natural landscape at this time of the year are stunningly beautiful. This annual display of nature showing off its true colors provides a reminder that winter is on its way. And winter is the nemesis season for…

Here in the Northern Hemisphere, the summer holidays have finished. However, as scleroderma patients, we know all too well that we do not have a holiday from this diagnosis. More often than not, the management of the multi-complex symptoms makes for a full-time job. I have previously…

August is Gastroparesis Awareness Month. In this column, I highlight some of the tests carried out to determine stomach damage levels and the overall productivity of the digestive system process. Gastroparesis occurs when the stomach cannot pass food down to the small intestine, thereby…