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…
Those with scleroderma will tell you that the disease is many things, but fun is certainly not one of them. Lately, I have been struggling with the effects of medication changes to address my secondary adrenal insufficiency. Weaning off hydrocortisone is part of…
I ended up with a really nasty urinary tract infection (UTI) a couple of weeks ago that I could only get rid of after two attempts of using two different antibiotics. Because I am an immunosuppressed patient, any type of infection puts me in…
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 scleroderma means I need to make many important decisions to function, from treatment options to whether I’m well enough to get out of bed. Choices, choices, so many choices. It’s a miracle I get through so many on any given day. I…
“You practicing to become a ballerina?” my mom asks me as she lathers up soap on a sponge to wash my back. I’ve gotten pretty good at showering with one foot sticking out, as a result of an open ulcer on my heel that has to stay dry.
All those with chronic illness, and particularly those with invisible disabilities including my fellow scleroderma warriors, will know that to be able to attend important social occasions we have many considerations. Practical issues, such as parking, seating, and lift access, need to…
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…
One of the most devastating ways that having scleroderma has changed my life is that I have had to stop working. Pain and profound fatigue required me to close my successful counseling practice. It was an extremely difficult decision, and one I didn’t take…
It’s unchallenging for most people to look back on life and instantly recall a singular, traumatic moment when they experienced emotional or physical pain. Whether it’s breaking an arm or losing a loved one, the moment is unforgettable due to the psychological impact. For those with a chronic…
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