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. Researchers analyzed OxyHem levels in 267 patients screened for pulmonary hypertension by Andrea Lobo, PhD (Scleroderma News) Oxygenated hemoglobin may be a new prognosis biomarker for systemic sclerosis (SSc) patients screened for pulmonary hypertension (PH), a study in Germany shows.
Low levels of oxygenated hemoglobin (OxyHem), the protein that carries oxygen to body tissues, were significantly associated with worse survival among SSc patients. Also, the combination of a low predicted diffusion capacity for carbon monoxide (DLCO) — a standard lung function assessment — with low OxyHem may predict developing PH. “This study provides important insights into prognostic predictors and stratification models in SSc patients screened for PH,” the researchers wrote in “Oxygenated hemoglobin as prognostic marker among patients with systemic sclerosis screened for pulmonary hypertension,” which was published in Scientific Reports. A feature of SSc is the accumulation of scar tissue in the skin, which can affect internal organs. The level of organ involvement predicts the disease’s outcome. Pulmonary complications, including pulmonary arterial hypertension, are the leading cause of death among people with SSc. Screening and early diagnosis are essential to the disease’s prognosis. Previous studies identified oxygen saturation (blood oxygen levels) and anemia, or reduced levels of red blood cells in the blood, as prognostic predictors of SSc. Proteins are related to hypoxia, blood vessel disease, and collagen turnover by Patricia Inácio, PhD The levels of three blood proteins — endostatin, basic fibroblast growth factor (bFGF), and platelet-activating factor acetylhydrolase (PAF-AH) beta subunit — may help predict the risk of progression from early to definite systemic sclerosis (SSc), according to a new study.
“In particular, endostatin was the protein most strongly associated with disease progression, and it is worthwhile to further investigate its mechanistic roles for its possible pathogenetic [disease] role in SSc development and its therapeutic potential,” the researchers wrote in the study, “Proteomic aptamer analysis reveals serum markers that characterize preclinical systemic sclerosis (SSc) patients at risk for progression toward definite SSc,” which was published in Arthritis Research & Therapy. In SSc, or scleroderma, the immune system wrongly recognizes the body’s own proteins as foreign and mounts an immune attack by producing antibodies against them. The hallmark of SSc is thick and hardened skin, but other organs can be damaged. At early (preclinical) stages, symptoms are typically limited to Raynaud’s phenomenon, a condition wherein the fingers and toes become numb and cold in response to low temperatures or stress, along with SSc-specific autoantibodies, and abnormalities in the small blood vessels of the nail folds. About 50% of patients with preclinical SSc progress into definite SSc within five years of being diagnosed. Understanding what promotes that progression may help uncover potential therapeutic targets. A Canadian advocate tells how she's managed the disease over the years - Article from Scleroderma News Silvia Petrozza is a powerhouse! Known as the Autoimmune Slayer, she has almost 1,700 Instagram followers and always seems to have her fingers in disease advocacy efforts in Canada. A mother of three, she also has her own business — impressive for a woman living with scleroderma since age 23. I interviewed her by email. Following are her responses, lightly edited for clarity. AG: Tell me about your journey to diagnosis. SP: When I was a teenager, I unknowingly experienced Raynaud’s syndrome. My doctor chalked it up to poor circulation. However, periodically throughout my teenage years, I was sick. But my doctor never really looked into why. In 2007, within months of having my first child, I was officially diagnosed with scleroderma. My Raynaud’s started progressing rapidly, and the pain became unbearable. I even experienced my first digital ulcer. My sister had been convinced I had lupus. However, after my initial doctor visit, scleroderma was the verdict. I immediately began looking for a specialist, which turned into a long and draining process. Because scleroderma is so rare, I had to travel quite a ways, to Toronto, for adequate care. How difficult has it been living with scleroderma? Living with scleroderma is hard! I’ve had to find my “new normal” in order to cope with daily life. Scleroderma can also be unpredictable. Tasks like getting dressed, doing chores, and being a mom can be very difficult. I’ve had to learn to adjust my expectations. I’ll have days when my pain is manageable. But in order to maintain my status quo, I undergo monthly scheduled infusions of iloprost (synthetic prostacyclin, known by the brand name Ventavis and often used for pulmonary arterial hypertension). These treatments require me to leave my family, travel two hours from home, and then spend two days in bed recovering. Scleroderma doesn’t just affect me, but my family as well. Columnist Amy Baker from Scleroderma News explains how she maintains a positive attitude Living with a chronic illness like scleroderma can be a constant challenge. Dealing with myriad doctor appointments, pharmacy runs, and symptoms is often time-consuming. Staying calm while managing this disease is easier said than done.
One thing that’s helped me on this crazy journey is maintaining a positive attitude. But how can someone be positive while living with such a difficult illness? One way is to realize that not every day is a bad day. Some days, there are no appointments. Some days, I feel like my old self. And on the days that are hard, I listen to some uplifting music, feed my soul, and do what makes me feel good. Following are a few ways I find my Zen while living with scleroderma. Overwhelmed Columnist Amy Gietzen struggles with a slew of mysterious symptoms A chronic, life-threatening health problem can disrupt all aspects of your life, especially when it develops unexpectedly.
When I was diagnosed with scleroderma at age 19, I was overwhelmed by difficult emotions, from fear and worry to profound sadness, despair, and grief. These feelings rushed over me like cold waves of water, leaving me numb and frozen with shock. I felt like I’d never be able to cope. For years I put on a brave face. I put my head down and did the work, always trying to be proactive and positive in the face of scleroderma. But I still felt like I was moving further and further away from my goal of stabilizing my symptoms. When would all of my hard work, dedication, and treatment compliance pay off? Body betrayal is a common experience among people with chronic illness by Amy Gietzen from Scleroderma News After I was diagnosed with scleroderma in 2001, I found myself having some strange thoughts, such as, “What’s wrong with me? My body hates me. I hate my body. What did I do to deserve this? Why can’t I just be normal again?”
While many of the feelings I experienced are hard to describe and identify, I vividly remember the feeling of betrayal coursing through my veins for months after my diagnosis. Because scleroderma can affect people in so many different ways, and because symptoms can ebb and flow and change over time, it can be easy to think that your body is out to get you. For me, it felt like my body was betraying my trust in it. I can’t recall a time since my diagnosis that I wasn’t in pain or, at the very least, uncomfortable with the changes I was experiencing. In my first few years with scleroderma, I felt like I had no control over what was happening to me. At any given time, my hands would cramp, my muscles would stiffen and tense, and my skin would itch so intensely that I needed to ice it with cold packs. HSI technology seen as novel way to quantify disease activity by Andrea Lobo, PhD from Scleroderma News Hyperspectral imaging (HSI) — technology used in medicine to obtain a three-dimensional dataset — may be a feasible, non-invasive technique to quantify the severity of Raynaud’s phenomenon associated with systemic sclerosis (SSc-RP), according to a new study.
This “technology may present a novel, fast, and effective method to quantify and monitor disease activity in SSc-RP,” the researchers wrote. HSI technology also may provide needed outcome measures for clinical trials of potential treatments for the condition. “There is an unmet medical need to enhance the SSc-RP clinical trial design to enable valid testing of therapy,” the team wrote. The study, “Hyperspectral imaging in systemic sclerosis-associated Raynaud phenomenon,” was published in the journal Arthritis Research & Therapy. |
AuthorScleroderma Queensland Support Group Archives
May 2024
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