Living with a chronic illness is like fighting a war by Tomisa Starr | September 24, 2025

​When I was diagnosed with scleroderma, I cried. I wondered, “What is going to become of me?” I didn’t feel brave. I felt helpless and afraid.

My scleroderma symptoms didn’t come all at once. Shortness of breath and fatigue — symptoms of interstitial lung disease (ILD) — came on slowly. These can delay an ILD diagnosis because they are vague and can have many causes. For example, I have pulmonary arterial hypertension as well as scleroderma, and difficulty breathing and fatigue can also be caused by a scleroderma renal crisis. In my case, however, the symptoms are caused by scleroderma’s direct effect on my lungs. 
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I also have gastrointestinal symptoms, such as heartburn and bloating, that are very bad and my reflux is unbelievably painful. Whenever I have reflux, my throat hurts so badly that it feels like I’ve been scalded. Drinking water helps thin out the mucus and acid, but it still hurts. I take medications to control my stomach acid.

Changes in protein signatures a potential therapeutic target by Steve Bryson, PhD | September 16, 2025

Increasing levels of self-reactive antibodies in the bloodstream after the start of treatment are associated with the progression of systemic sclerosis (SSc), according to recent research.

“We hypothesize that rising antibody [levels] during treatment may reflect ongoing immune activation, insufficient therapeutic response, or impending flare, whereas decreasing [levels] may signal immune modulation and treatment efficacy,” researchers wrote.

Moreover, changes in protein signatures related to the metabolism of fat-like lipids and oxidative stress, a type of cellular damage, may drive SSc progression, “highlighting novel biomarkers and therapeutic targets for personalized SSc management,” they added.
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The biomarker study, “Longitudinal Autoantibody and Proteomic Profiles Uncover Biomarkers and Mechanisms of Disease Progression in Systemic Sclerosis,” was published in Arthritis & Rheumatology.

Researchers enrolled 285 people with SSc to study gut bacteria, lung disease
by Andrea Lobo, PhD | September 9, 2025

​The presence and severity of interstitial lung disease in people with systemic sclerosis (SSc) are associated with a specific combination of bacteria in the gut, a study suggests.

“These species or their metabolic products may influence ILD [disease processes] and represent novel treatment targets,” the study’s researchers wrote. The study, “International Investigation of the Gut-Lung Axis in Systemic Sclerosis-Interstitial Lung Disease,” was published in Arthritis Care & Research.

​SSc, or scleroderma, is caused by an overactive immune system that leads to inflammation and the accumulation of scar tissue, or fibrosis, in the skin and internal organs. When fibrosis occurs in the lungs, it can lead to ILD, causing damage to the air sacs and making breathing difficult.

While people with SSc may have an imbalance in the gut microbial community, or intestinal dysbiosis, no studies have explored its relationship with SSc-ILD, leading researchers to study 285 scleroderma patients, who did or didn’t have ILD, from seven SSc centers on five continents. The participants had a mean age of 54.7 and a disease duration of 9.8 years. Most were women (83.5%) and 62.5% had ILD. Those with ILD were more likely to use proton-pump inhibitors (88% vs. 69%), which reduce stomach acid production, and immunomodulatory therapies (73% vs. 50%).

Patients rarely discuss sexual issues with their doctors, however by Marisa Wexler, MS | September 2, 2025

​Sexual dysfunction is common among people with systemic scleroderma, but is rarely discussed between patients and their doctors, a new study shows.

In the study, “Sexual dysfunction and perceptions of rheumatologist engagement on this issue in patients with systemic sclerosis,” the researchers said the reasons for this can be “due in part to low comfort level, time restraints, and uncertainty related to the role of the rheumatologist in this health domain.” The study was published in the Journal of Scleroderma and Related Disorders.

Systemic scleroderma, or systemic sclerosis (SSc), is marked by scar tissue accumulating in various organs and can result in a range of symptoms that may cause problems during sexual intimacy. The disease leads to impaired blood flow to the genitals, which can result in erectile dysfunction or vaginal dryness. Other symptoms, like impaired hand mobility or incontinence, can also pose obstacles during sex.

Studies that assess sexual dysfunction in SSc have traditionally used standard questionnaires such as the Female Sexual Function Index (FSFI) for women or the International Index of Erectile Function (IIEF) for men. These indexes, which are designed for the general population, may not capture the nuanced ways in which SSc can affect sexual expression, however.
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Scientists in the U.S. developed the Sexual Function in SSc Questionnaire to create a more disease-specific measure of sexual dysfunction in SSc. The new questionnaire was administered to 41 people with SSc. Of them, 26 (63%) reported some form of sexual dysfunction, a rate consistent with those in prior studies. Specific issues related to sex included a lack of desire, pain, lack of lubrication, trouble climaxing, erectile dysfunction, fatigue, and recurrent vaginal infections.

Findings may benefit prevention, diagnosis, and prognosis of disease by Marisa Wexler, MS | August 26, 2025

Infection with Epstein-Barr virus (EBV), the virus that causes mononucleosis, may increase the risk of developing systemic sclerosis (SSc), according to a new analysis of genetic data.

Findings also indicate that SSc is less likely to develop in people who’ve been infected with human immunodeficiency virus (HIV) or SARS-CoV-2, the virus that causes COVID-19.

“These findings may benefit the prevention, diagnosis, and prognosis of SSc,” the investigators wrote.
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The study, “Mendelian randomization unveils genetic causal relationships between viral infections and systemic sclerosis,” was published in Scientific Reports.