Columns

August is Gastroparesis Awareness Month. Gastroparesis occurs when the stomach can’t pass food down to the small intestine, thereby affecting the digestion process. Gastroparesis is an unwelcome and debilitating symptom to most scleroderma patients, myself included. Symptoms include bloating, acid reflux, constipation, diarrhea, vomiting, feeling full after…

At the start of this year, I delightedly joined the National Institute for Health Research (NIHR) as a patient research ambassador (PRA) for the dermatology and musculoskeletal departments at The Royal Free Hospital, London. (Courtesy of Nicola Whitehill) According to their…

It was Wednesday again, the dreaded supermarket day. The weekly shopping trip is a big ask for me, especially because it is winter in New Zealand. The cold air is not my friend. It increases the number of Raynaud’s attacks on my extremities, and it affects…

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…

Not so many years ago, around the time of my diagnosis, I recall having a major hissy fit. I had been invited to a wedding, and I didn’t like how I looked that day. My hair wasn’t right, and I just didn’t like the way my…

I think I have been stuck in some kind of time warp. Either that or I have been unconsciously under the illusion that I haven’t really changed over the past couple of decades. However, I have, of course. This realization was brought about recently…

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…

When I wrote my last column, I had no idea that my old dog Merlin was on the verge of dying. Despite having suffered from nasty arthritic hind legs for a while, he still had a good quality of life and was managing with pain…

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…

One of the many distressing aspects that scleroderma has brought to my life is my immune system’s inability to cope with any illness that comes my way. Part of the problem is that I take mycophenolate to help slow down the progress of my lung…