Columns

Flower arrangements shaped like ice cream sundaes, new pajamas, stuffed animals, books, bracelets, and countless other trinkets. These are the gifts I remember receiving during the three-day hospital stay that followed my dermatologist’s diagnosis of juvenile scleroderma. But the fun didn’t stop with all the gifts! Oh, no way! My roommate and…

It seems to me that managing Systemic Scleroderma is a battle that occurs daily in order to balance life and survive. Should I bother to do that laundry that’s been piling up, or should I rest? (Hmm, what’s more important: Wearing clean undies or being well enough to function?) Do…

Editor’s Note: In Lisa Goodman-Helfand’s debut article for her column “Comfortable in My Thick Skin,” she tells her own scleroderma diagnosis story. Her experience with the disease began at age 10, when little was understood about scleroderma. Read about the start of her journey here. We’ve all experienced pivotal moments that are forever…

The skin is the largest organ in the body and, more often than not, will be affected by scleroderma, as the name “sclero” — thickening — and “derma” — skin — implies. The exceptions are a SINE scleroderma diagnosis, and a limited scleroderma diagnosis, both of which could present…

Social media is an intriguing thing, isn’t it? It can be wonderful to have sites such as Scleroderma News at our fingertips, and I do believe the internet is a platform that can provide encouragement, the latest information, and a sense of community. However, one pitfall of social media that…

Hello, and welcome to my ordinary girl column. This is my very first piece of writing, so it makes sense to introduce myself and “set the scene” for what I hope will be a useful and helpful read for those interested. First, it’s been three years since I was diagnosed…

The role of medical research is of huge importance to the scleroderma patient, and to rare disease patients in general. There is currently no cure for scleroderma, and the causative mechanisms still remain a mystery. That said, understanding the cause and cure is accelerating faster than ever before. Investment…

The month of September always prompts a trip down the memory lane — or, for me, the abyss that is September 1997. It was at that time, age 24, when I was diagnosed with Scleroderma — resulting in my life being turned upside down, forcing me to abandon most of…

Most scleroderma patients will experience Raynaud’s, the narrowing of blood vessels, as a secondary symptom. Raynaud’s can sometimes present as the diagnosing feature of scleroderma, however, this was not the case for me. Tight, puffy fingers and intense lethargy along with difficulty in swallowing …

The skin is the largest organ in the body and is affected in most scleroderma patients. The exception to this rule is the limited subset version of scleroderma patients. On Day 1 in my Scleroderma Awareness Month posts, I focused on the different subsets of scleroderma…