Findings: Education, marital status may affect symptoms by Margarida Maia, PhD
Having a higher level of education or being married may mean fewer symptoms of depression for people with systemic sclerosis (SSc), according to a systematic review of multiple studies.
Researchers also observed that lung involvement, breathing problems, and tender joints were linked to more symptoms of depression, but not anxiety.
Because there was not much evidence available, “future studies should examine prevalence of mood and anxiety disorders in SSc in large, representative samples,” the researchers wrote.
The systematic review, “Results from a living systematic review of the prevalence of mood and anxiety disorders and factors associated with symptoms in systemic sclerosis,” was published in the journal Scientific Reports.
People with SSc experience a wide range of symptoms caused by a buildup of scar tissue in the skin and possibly internal organs such as the heart, lungs, kidneys, and intestinal tract.
“Disease presentation is extremely heterogeneous, and its course is unpredictable,” the researchers wrote. Because they are unsure of how their disease will progress, many people with SSc experience changes in mood or begin to feel anxious.
Also contributing to mood and anxiety disorders are “high levels of chronic pain, fatigue, body-image distress, overall disability, increased risk of mortality, and limited treatment options,” the scientists added.
Patients positive for Scl-70 antibodies at more risk of major organ involvement by Steve Bryson, PhD
People with systemic sclerosis (SSc) who test positive for Scl-70 self-reactive antibodies are at a higher risk of major organ involvement, particularly the lungs, than those with other types of autoantibodies, a study suggested.
Digestive tract involvement was associated with the presence of anti-nuclear (ANA) autoantibodies.
SSc patients with Scl-70 autoantibodies should be monitored for lung disease, regardless of whether their disease is limited to the skin or occurs in both skin and internal organs, the researchers recommended.
“Understanding these risk factors might help with earlier diagnosis and better disease management for people with SSc,” they noted in the autoantibody study, “Clinical phenotype in scleroderma patients based on autoantibodies,” which was published in Rheumatology Advances in Practice.
SSc, also called scleroderma, is an autoimmune disease that features the buildup of scar tissue in the skin and several other organs, potentially. It’s usually classified into two subtypes, based on the extent of skin symptoms. Limited cutaneous SSc (lcSSc) is indicated by skin symptoms confined to the face and arms below the elbows. Diffuse cutaneous SSc (dcSSc) involves widespread skin scarring that’s accompanied by internal organ damage.
“However, dividing SSc according to skin involvement might be too simplistic, meaning that we could overlook a wider spectrum of the disease,” the researchers wrote.
People with SSc have self-reactive autoantibodies that mistakenly target cellular components in their own tissues, including Scl-70, ANA, and anti-centromere (ACA) autoantibodies.
While lcSSc has been associated with anti-ACA autoantibodies and dcSSc with anti-Scl-70 autoantibodies, some people with lcSSc are positive for Scl-70 autoantibodies and some with dsSSc are positive for ACA autoantibodies.
SPIN was founded by McGill University researcher Dr. Brett Thombs as a partnership of researchers, scleroderma clinicians, patient organizations, and patients, who work together to develop and test online programs to help people cope with important problems related to scleroderma. SPIN was launched in 2011 with seed funding from the Scleroderma Society of Ontario and Scleroderma Canada.
SPIN maintains a large cohort of over 1,800 scleroderma patients, recruited by scleroderma clinicians from around the world. These patients complete regular online questionnaires to help researchers understand their challenges and support needs.
SPIN’s mission is to work with people with scleroderma to identify their needs and prioritize research in areas most important to them and to develop, test, and disseminate accessible patient programs that improve quality of life and empower people with scleroderma and their loved ones.
See their letter of thanks in this link.
A daughter cries 'Emergency!'; a mother with scleroderma responds with calm by Lisa Weber
“Mama! Come quick!” my daughter called through sobbing tears. She’d been unwell for a few days and had developed a high fever that morning. I was already on high alert, and her cries for me were like sirens.
As I was crouched down beside her as she lay on the couch, she turned her phone so I could read the alarming message that warned her to seek immediate emergency care.
Dr. Google had struck again!
With her belly pain and fever, I’d already made a doctor’s appointment for that day. She’d asked why, and I’d told her it was always a good idea to get checked out if you don’t get better after a few days. I hadn’t mentioned that I was worried she had a bladder infection.
Just like her mama, she’d wanted to be armed with information. With her phone glued to her teenage hands, she’d turned to the internet for answers.
And thanks to Google, she was now terrified her body was close to sepsis and believed a site’s warnings that death was a possibility if she didn’t get to the ER right away. One Google search is all it ever takes to send a sane mind into a death spiral.
Autoantibodies called ATAs appear to speed disease progression, study finds by Margarida Maia, PhD from Scleroderma News
About half of the people with suspected very early systemic sclerosis (SSc) may go on to develop definite disease, and those who test positive for anti-topoisomerase antibodies (ATAs) are more likely to experience faster disease progression.
That’s according to a study from the Netherlands where the proportion of people who tested positive for ATA, autoantibodies associated with SSc, was very low among those with suspected very early disease.
“The low ATA prevalence among patients with suspected very early SSc suggests swift disease progression in ATA-positive SSc and consequently a different approach to identify this subgroup before development of irreversible organ damage,” the researchers wrote.
The study, “Progression from suspected to definite systemic sclerosis and the role of anti-topoisomerase I antibodies,” was published in the journal RMD Open.
Diagnostic workup includes extensive testing
SSc, also known as scleroderma, is characterized by self-reactive autoantibodies in the immune system attacking healthy tissues and causing them to become scarred. Scar tissue can build up in the skin and in internal organs such as the heart, kidneys, lungs, and digestive tract.
As part of the workup toward diagnosis, patients usually undergo examination for medical history, physical assessments, and various other tests, including blood tests to check for the presence of autoantibodies.
Because not all patients meet the criteria for diagnosis, doctors came up with criteria for suspected very early SSc. The criteria consist of Raynaud’s phenomenon (fingers and toes that feel numb, prickly, and frigid in response to cold temperatures or stress), the presence of SSc-specific autoantibodies, puffy fingers, and changes in the small blood vessels under the fingernails.
“Specific autoantibodies are important risk factors for progression from suspected very early SSc to definite SSc,” the researchers wrote. In earlier work, however, they found that only a small proportion of patients with suspected very early SSc tested positive for ATA.
To know more about ATA and how these autoantibodies contribute to disease progression to definite SSc, the researchers carried out a review of the literature.
Percentage of hypochromic red blood cells higher than 2%, DLCO of 65% or lower seen as factors by Marisa Wexler, MS
Analyzing the color of red blood cells could help predict survival outcomes among people with systemic sclerosis (SSc), a study shows.
The study, “Hypochromic red cells as a prognostic indicator of survival among patients with systemic sclerosis screened for pulmonary hypertension,” was published in Arthritis Research & Therapy.
Red blood cells carry oxygen through the bloodstream out to all the tissues. To ferry it, they use an iron-containing protein called hemoglobin. When iron-rich hemoglobin binds to oxygen, it turns red, which is how blood gets its distinctive “blood red” color.
When iron levels are too low, red blood cells can become hypochromic, meaning they’re not as bright. Chronic inflammatory conditions like SSc may cause fluctuations in iron levels, but the clinical consequences are incompletely understood.
In this study, researchers led by scientists in Germany assesed whether the percentage of hypochromic red blood cells — referred to as % HRC — was associated with differences in survival among people with SSc.
The analysis included data for 171 patients who underwent screening for pulmonary hypertension (abnormally high pressure in the lung’s blood vessels). Among them, 81.3% were female, the mean age was 60, and nearly two-thirds had elevated pulmonary blood pressure. The patients were followed for a median of more than two years, during which time 18 died, mainly from complications related to lung disease.
Probiotic therapy may need to be more personalized for autoimmune disorders by Marisa Wexler, MS
People with systemic sclerosis (SSc) who have more severe digestive problems tend to have less diversity in the makeup of bacteria living in their gut, a new study reports.
Certain bacterial species, including Lactobacillus — present in commercially available probiotics — are more abundant in SSc patients with more digestive complaints, results show, which suggests that probiotic therapy may need to be more personalized for people with autoimmune disorders like SSc.
The study, “Gastrointestinal tract involvement in systemic sclerosis: The roles of diet and the microbiome,” was published in the journal Seminars in Arthritis and Rheumatism.
Other risk factors include pneumonia, pulmonary hypertension by Patricia Inácio, PhD from Scleroderma News
Systemic sclerosis (SSc) patients with interstitial lung disease (ILD), where the lungs become scarred, are more than three times more likely to be hospitalized due to respiratory failure, according to real-world data collected in the U.S.
Other strong risk factors for respiratory failure among hospitalized SSc patients included pneumonia and pulmonary hypertension, or high blood pressure in the vessels that supply the lungs.
“Outpatient optimization and inpatient recognition of these risk factors can lead to improved hospitalization outcomes for SSc patients,” the researchers wrote.
The study, “Risk Factors for Respiratory Failure in Patients Hospitalized With Systemic Sclerosis: An Analysis of the National Inpatient Sample,” was published in the journal Cureus.
Patients in racial minority groups found to be more dissatisfied with their lives by Patricia Inácio, PhD of Scleroderma News
More than 30% of people with systemic sclerosis (SSc) are dissatisfied with their lives, and higher levels of dissatisfaction are reported by racial minority groups, a U.S.-based study has found.
The spiritual well-being of patients was the strongest contributor to life satisfaction scores. These scores were found to be significantly lower for Black, Asian, American Indian, and Alaska Native patients.
“Spiritual well-being is particularly important in understanding life satisfaction in people with systemic sclerosis,” researchers wrote, adding that this should prompt further research to “assess and examine spiritual well-being and its impact on life satisfaction in a larger and more diverse systemic sclerosis sample.”
The study, “Factors associated with life satisfaction in systemic sclerosis: Examining the moderating roles of social support and spiritual well-being,” was published in the Journal of Scleroderma and Related Disorders.
Life satisfaction often reflects mental health status
SSc, also known as scleroderma, is a chronic autoimmune condition that causes inflammation and fibrosis (scarring) of the skin, but it can also affect internal organs. Symptoms can include joint pain, fatigue, and gastrointestinal problems — all of which increase functional limitations and affect quality of life.
Life satisfaction, a parameter that reflects how people evaluate their lives as a whole, is one of the tools for assessing quality of life. Life satisfaction often reflects mental health status and has been associated with mortality risk.
However, few studies have addressed life satisfaction of SSc patients. Prior research has indicated that social support is important to help people with SSc cope with disease-related challenges, and that spiritual well-being has a positive impact on their perception of well-being.
To understand the effects of spiritual well-being, integrated with social support and functional limitations, a team of researchers in the U.S. analyzed data from the University of California Los Angeles Scleroderma Quality of Life Study.
SSc patients, 18 and older, completed questionnaires about their demographics, symptoms of depression, functional limitations, social support, and spiritual well-being.
Functional limitations, social support, and especially spiritual well-being are all associated with subjective well-being in people with SSc.
The disease has brought on many physical and mental changes for columnist Lisa Weber of Scleroderma News
I often see a butterfly symbol associated with various autoimmune diseases, including scleroderma. While some conditions, such as lupus, can cause a butterfly-shaped malar rash, my research hasn’t yielded any other explanations for this connection.
However, I do have my own theory.
Tucked safely away from the world, the butterfly’s life starts inside an egg as a caterpillar, unaware of the impending dangers or worries to come. This phase is like my life pre-scleroderma — a time when I believed all illnesses had cures.
Becoming a caterpillar
My diagnosis awoke me from my naive and simple understanding of the world. Before scleroderma, I thought I could overcome anything if I fought hard enough. If I saw the right doctors, ate the right foods, and lived a healthy lifestyle, I could win any battle and be healed.
For the first few years after my scleroderma diagnosis, I waged war, aiming to become stronger than my disease. But the more I fought, the more I became a version of myself that I hated.
Because I was so focused on scleroderma, I put the spotlight on everything health-related. This included all the physical changes, which made me feel ugly and less than my potential.
My fingers tightened into awkward, bony sticks. I developed tiny, red blemishes all over my face called telangiectasias, and I saw disfiguring changes happen to my mouth. I felt like I’d morphed into something grotesque and unwanted. I now think of this as my caterpillar stage.
During this phase of my life, I was angry and devastated. I felt as though my life would never be as beautiful as it was before I was exposed to the world of rare diseases. I battled myself as much as I battled scleroderma.
I was so appalled by my physical changes, disabilities, and inability to find the magic cure I so desperately wished for. And it was destroying me.
Scleroderma Queensland Support Group