It’s​ ​beginning​ ​to​ ​look​ ​an​ ​awful lot like the holidays!​ ​Everywhere​ ​I​ ​go​ ​I​ ​see ​festive decor and signs for holiday sales.​ ​I ​guess​ ​I​ ​shouldn’t​ ​be​ ​surprised​ ​to hear​ ​”Jingle​ ​Bells” ​and​ ​”White​ ​Christmas” ​on​ ​the​ ​radio​ ​in November.​

​The​ ​hustle​ ​and​ ​bustle​ ​of​ ​the season​​ ​often bring​s​ ​long​ ​lines,​ ​high-calorie​ ​meals, ​delicious desserts,​ ​and, most​ ​importantly,​​ ​the exchanging of gifts.​ ​​I​ ​love​ ​the​ ​tradition​ ​of​ ​gift-giving​ ​and​ ​the​ ​smiles​ ​it​ ​brings​ ​to​ ​the​ ​faces​ ​of​ my close friends and loved ones.​ ​Seeing the​ ​excitement​ ​that​ ​glows​ ​on​ ​my niece’s​ ​face​ ​as she​ ​tears​ ​through​​ sparkling ​​paper​ ​and​ ​ribbons​ ​​is​ ​priceless.​ ​
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However, what​’s​ ​hard​ ​for​ ​me​​ ​is​ ​the​ ​cost​ ​of​ ​those​ ​lovely​ ​gifts. I always wonder how I will survive the holidays and afford presents on my income.

Analysis of immune cell gene activity may predict patient's response to treatment - by Marisa Wexler, MS 

Analyzing the global genetic activity of immune cells called monocytes can identify distinct groups among people with systemic scleroderma, a new study indicates.
This type of analysis “may represent a viable mechanism for identifying patients and potentially their response to therapeutics,” its researchers wrote.
The study, “Three Distinct Transcriptional Profiles of Monocytes Associate with Disease Activity in Scleroderma Patients,” was published in Arthritis & Rheumatology.

Patients with persistent symptoms used more healthcare resources, researchers said - by Lindsey Shapiro, PhD

Tobacco use by systemic sclerosis (SSc) patients is linked to worsening gastrointestinal (GI) symptoms, but the immunosuppressive and anti-scarring medications used to treat the autoimmune disease aren’t, according to a recent analysis of data from a multicenter, U.S.-based patient registry.
The findings are striking in light of previous studies that suggested certain medications might drive GI problems in SSc patients, whereas tobacco hasn’t yet been linked to this type of symptom, noted Sarah Luebker, a doctor of osteopathic medicine, the study’s first author ,and a rheumatology fellow at Vanderbilt University Medical Center.

The word “mortality” has ping-ponged around my brain from the moment I was introduced to the word “scleroderma.” I’ve dealt with the physical and emotional burdens of pain, depression, disabilities, and loss for over two decades.

As a teenager, living with scleroderma made me angry. I bottled up all of my rage-induced emotions so I could fight for my life and find adequate medical care. Nothing I went through during those years was straightforward. My life then seemed out of control and forever changed. I had to sift through granules of emotional sand to find balance, and all the while my mortality was a specter in the distance, watching intently.
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I lived out my turbulent 20s juggling work, school, and scleroderma. Each day one would outweigh the other until eventually, I lost my rhythm. Nursing school was my happy place, and even though I was in constant pain from lifting patients and making hospital beds, I loved every minute of honing my craft.

Most reporting on-the-job silica exposure are men, a study finds - by Margarida Maia, PhD

Exposure to silica, a mineral used to make building materials, at work is associated with younger age at diagnosis, more severe disease, and reduced survival in people with systemic sclerosis (SSc), according to a study of more than 1,000 patients in Canada and Mexico.
Also, those reporting on-the-job silica exposure were nearly eight times more likely to be men than women. Exposed male patients were more likely to be Caucasian, smokers, and to have more severe lung disease, while exposed female patients were younger at SSc diagnosis relative to those unexposed.
“Screening for silica exposure among higher risk individuals may be beneficial,” the researchers wrote, adding that “these patients may require closer monitoring for systemic disease.”
The study, “Exposure to silica and systemic sclerosis: A retrospective cohort study based on the Canadian Scleroderma Research Group,” was published in the journal Frontiers in Medicine.

For some scleroderma patients, loss of sleep and fatigue are significant issues. Trying to manage a barrage of symptoms while exhausted is a tiring game of cat and mouse.

Fortunately, until recently, I had only experienced fatigue in small doses. The occasional nap or sleepless night was all that rattled my routine. It wasn’t until I was diagnosed with heart failure in 2020 that I realized that sleep plays an essential role in my disease management.
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