Scleroderma News Columns

September 20, 2021September 20, 2021

Skin, Hives, and Scleroderma

COVID-19 Columns, Scleroderma News Columns

Scleroderma, lupus, rheumatoid arthritis, Sjögren’s syndrome — all of these are autoimmune diseases. And they’re invading my every cell. I’m displeased by how these diseases have made themselves at home in ... Read more

September 17, 2021September 17, 2021

Am I Jealous of Someone Else’s Diagnosis or Angry With Scleroderma?

Scleroderma News Columns

I hate admitting that I often find myself trapped by jealousy. It makes me feel like I have a rotten core. Do all good people have these thoughts? Or am ... Read more

September 10, 2021September 10, 2021

Fighting Chronic Illness With a Positive Mindset

Scleroderma News Columns

The machine monitoring my vitals beeps annoyingly to alert the nurses that my blood pressure has dropped again. My limbs ache from the frigid air conditioning, and my body is ... Read more

September 8, 2021September 8, 2021

Tinker, Tailor, Scleroderma: Staying Positive in the Netherlands

Scleroderma News Columns

Joep Welling’s story is among those featured in More Than Scleroderma, an initiative by European pharmaceutical company Boehringer Ingelheim to showcase how various people have adapted to life with the disease. ... Read more

August 27, 2021August 27, 2021

Living With Scleroderma Means Living With Grief, Too

Scleroderma News Columns

My little girls sway back and forth in their ruffled dresses. My face is fixed with a glowing smile as I watch the home video of these sweet babies. They ... Read more

August 23, 2021August 23, 2021

I Dread Questions About My Career as Someone With Scleroderma

Scleroderma News Columns

“What do you do for a living?” Ahh, one of the most common questions asked upon meeting new people. I dread this moment. Do I tell them what I used ... Read more

August 20, 2021August 20, 2021

An Open Letter to My Late Friend With an Invisible Illness

Scleroderma News Columns

Decades ago, you passed quietly through the background of everyone’s busy lives. My heart still aches for you, even more now. You see, I didn’t know what you were going ... Read more

August 18, 2021August 18, 2021

How Good Advocacy and Fundraising Drive Scleroderma Research

Scleroderma News Columns

Like it or not, in many facets of life, money talks. For scleroderma research and development, the largest portion of funding comes from lawmakers in the U.S. Congress. Since 2016, ... Read more

August 16, 2021August 16, 2021

Grieving the Old Me, Before I Was Diagnosed With Scleroderma

Scleroderma News Columns

I wonder if the “old Amy” thinks of me as much as I think of her. I miss her terribly. She seemed to slip away from me without me even ... Read more

August 6, 2021August 6, 2021

Pandemic Panic Is Real for the Immunocompromised

COVID-19 Columns, Scleroderma News Columns

As the meeting doors open, I’m met with the coolness of a windowless, air-conditioned room. Normally, I would welcome this gift on a sweltering summer day, but today is different. ... Read more

August 4, 2021August 4, 2021

The Young and the Beautiful: Living With Scleroderma as a Young Adult

Scleroderma News Columns

Someone once remarked that scleroderma is the “anti-glamorous” disease because it mainly affects menopausal women. But the condition also affects children, young adults, and men. In this column, we’ll hear ... Read more

July 30, 2021July 30, 2021

Don’t Settle When Choosing Your Team of Doctors

Scleroderma News Columns

Many books have been written about finding your true love. Yet, there’s not much guidance about finding the right doctors. I suppose this didn’t matter when I was healthy. Now ... Read more

July 28, 2021July 28, 2021

Scleroderma Research Is Not Slowing Down

Scleroderma News Columns

Although rheumatologists specializing in scleroderma are rare like the disease, they have something in common: passion. They’re passionate about understanding and managing the disease and compassionate toward those it affects. ... Read more

July 23, 2021July 23, 2021

4 Strategies That Ease My Gastroparesis Symptoms

Scleroderma News Columns

Date night with my husband resulted in mounds of clothing piling up on the bench in my closet. I was having a meltdown similar to that of a teenage girl ... Read more

July 19, 2021July 19, 2021

I Measure Success and Self-worth Differently With Scleroderma

Scleroderma News Columns

How do you measure success and self-worth? It may be a simple question for some, but for those who suffer from chronic autoimmune diseases such as scleroderma, the answer often becomes ... Read more