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4 Strategies That Ease My Gastroparesis Symptoms
Date night with my husband resulted in mounds of clothing piling up on the bench ...
More from Sclerodema News
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Physical Therapy Rarely Focuses on Hand, Mouth Problems, Study Finds
Nearly two-thirds of people with scleroderma undergo physical therapy — often called PT — and ... -
Partnership Aims to Lower Out-of-Pocket Costs for Rare Disease Meds
AllianceRx Walgreens Prime, a specialty and home delivery pharmacy, is partnering with TailorMed, a healthcare technology ... -
I Measure Success and Self-worth Differently With Scleroderma
How do you measure success and self-worth? It may be a simple question for some, ... -
Managing Medications With the Perfect Pill Organizer
“Did I take my pills?” I wonder as I hold three giant capsules. I stare ... -
Electrocardiograms to Monitor Heart Health Advised for SSc-PH Patients
Changes from the norm in the electrical conduction of the heart — called cardiac axis ... -
HSCT Has Given These Scleroderma Warriors a New Tomorrow
When I first met Cyndy Martin, 58, I was impressed with her vitality and energy, ... -
Nominations Open for 2022 Eurordis Black Pearl Awards
Nominations are now open for the worldwide 2022 Black Pearl Awards from Eurordis-Rare Diseases Europe. ... -
Getting Out of Bed Is No Simple Task With Scleroderma
“Get out of bed … now!” Are you kidding me? Getting out of bed would ... -
Wearing a Fake Smile to Get Through the Day
Can you recall a time when you smiled so much that your cheeks became sore? ... -
Stem Cell-derived Tiny Vesicles Lessened Fibrosis, Inflammation
Under-the-skin treatment with tiny vesicles produced by mesenchymal stem cells significantly lessened skin abnormalities and ... -
Skin Fibrosis Worse When Lungs Involved, Study Finds
Scleroderma involving the lungs is associated with a greater degree of skin scarring, or fibrosis, according ... -
Should I Go to the Emergency Room or Wait It Out?
The pounding of my heart echoes clearly in my ears. I can see the thumps ... -
Scleroderma Foundation More Than Doubles Research Funding to $2.7M
The Scleroderma Foundation is announcing that it has more than doubled its annual research funding, ... -
Centogene Sets Mission to Cure 100 Rare Diseases in Next 10 Years
At its first virtual investor event, biotech company Centogene set a bold mission: to cure ... -
What You Need to Know About July’s National Scleroderma Conference
The first National Scleroderma Conference I went to was in Anaheim, California, in 2014. Not ... -
US Study Shows Urgent Unmet Need in Diffuse Cutaneous Scleroderma
Despite immunosuppressive therapy, skin and lung involvement still progresses in about 20% of people with ... -
My Husband Lives With Scleroderma, Too
People often ask me how I continue to battle scleroderma. My answer mirrors that of ... -
EveryLife Introduces First of Kind ‘Roadmap’ to ICD Codes
To help patient advocacy leaders and their partners better understand how global health statistics codes ... -
Survey IDs Top Factors Influencing Raynaud’s Treatment Choice
An international survey found that the ability to use one’s hands, physical symptoms, and the ... -
Let’s Get Ready to Rumble in the Fight Against Scleroderma
The bell echoes loudly, signaling the fight’s start. The energy and stakes are high. Gloves ... -
Get Ready for NORD’s Patient and Family Forum, Set for June 26-27
Those who wish to gain practical tools for living optimally with rare diseases are encouraged ... -
Protein’s Levels in Blood May Mark SSc Patients at Risk of PAH
Blood levels of the protein endocan may be a potential biomarker in identifying people with ... -
The Other 20%: Scleroderma in Males
They’re the elusive red diamonds in a sea of white. Rare upon rare, males with ... -
Gesynta Pharma Seeks OK to Assess GS-248 in Trials
Gesynta Pharma has submitted an investigational new drug (IND) application to the U.S. Food and Drug ... -
Scleroderma Is Complicated to Explain and Challenging to Live With
“Look, Mom!” My teenage daughter bounds excitedly into the room to show me her phone. ... -
Rare 2030 Action Campaign Pushing for European Plan for Rare Diseases
Eurordis opened a campaign, called Rare 2030 Action, that is seeking to establish a European ... -
Free Light Chains in Blood and Urine May Aid in Diagnosis, Mark Activity
The amount of free light chain (FLC) molecules in blood and urine correspond to the ... -
‘Excuse Me, What Did You Say?’
The clock ticked loudly as the phones rang in unison with a ticking timepiece that ... -
Advocates Can Try for Grants Ahead of Rare Disease Week on Capitol Hill
Ahead of this year’s Rare Disease Week on Capitol Hill, held virtually July 14–22, the ... -
Efforts to Educate Mark Scleroderma Awareness Month This June
From joining a walk-a-thon to sharing videos of themselves saying the rare disease’s hard-to-pronounce name, ... -
IBS Laxative Linaclotide Can Help Manage GI Issues in Scleroderma
Linaclotide, an oral medication to treat constipation, is safe and well-tolerated, and can be used ... -
Mary J. Wheatley Is New Scleroderma Foundation CEO
Mary J. Wheatley will succeed Robert J. Riggs as CEO of the Scleroderma Foundation, an ... -
Two Wonder Women With Scleroderma Share What Motivates, Challenges Them
If I were a vegetable, I’d belong in a 5-pound sack of couch potatoes. When ... -
CDC: Those With Weakened Immune Systems Should Continue COVID Precautions
People with weakened immune systems, such as those with scleroderma, should continue taking all COVID-19 ... -
On the Chronic Illness Battlefield, My Enemies Are Not Just Physical
My fellow chronic illness warriors: You’ve never met me, but we’ve sat alone in the ... -
Group Sessions Helpful for Mild Anxiety During COVID-19, Trial Finds
A remote, peer-facilitated group intervention created to provide mental health and social support during the ... -
Ofev Safely Slows Lung Function Decline in SSc-ILD, Long-Term Study Finding
Ofev (nintedanib) safely and effectively slowed lung function decline in people with interstitial lung disease (ILD) associated ... -
Don’t Cry for Me, Scleroderma
It was one of those “oops!” moments — the express elevator down to your gut ... -
Scleroderma Warriors Project Expands Online Presence
The Scleroderma Warriors Project is expanding its online presence with an updated website and online communication ... -
‘Stepping Out to Cure Scleroderma’ Events Run Through June
The Scleroderma Foundation invites people to participate in Stepping Out to Cure Scleroderma, a combination ... -
A Tale of Woe From a Human Pin Cushion
“Don’t worry. This will feel like a pinch.” Sitting in the sterile room with a ... -
The Mother Lode: Highlighting the Special Moms of Scleroderma Patients
Along the street lined with neatly planned townhouses, an effervescent spirit zigzagged through the households ... -
Scientists Identify Scar-forming Mechanisms With Implications for Scleroderma
Scientists have identified a mechanism of scar formation in the skin, and demonstrated in mouse ... -
Genetic Activity in Skin May Define Stages of Juvenile Localized Scleroderma
Distinct profiles of gene activity in skin samples distinguish different disease stages in juvenile localized ... -
Relying on Gravity: Welcome to ‘Skintight,’ a New Column
(Sung to “Defying Gravity,” with apologies to Stephen Schwartz.) Something has changed within me Some ... -
Computer Algorithm Highly Accurate at Detecting PAH in Scleroderma
A computer algorithm called DETECT correctly identified all cases of a potentially life-threatening type of ... -
Study Differentiates Gene Activity Between Scleroderma, Lung Cancer
Gene activity analysis has revealed similarities and differences between scleroderma and related lung cancer, a ... -
Stem Cells Can Augment Fat Grafts in Treating Facial Atrophy
Treating facial atrophy in localized scleroderma by grafting stem cells from a patient’s own fat ... -
Vasohibin-1 Levels May Serve as Biomarker for Lung, Skin Scarring
Higher-than-normal blood levels of the vasohibin-1 protein are associated with a greater risk of interstitial ... -
EveryLife Scholarship Fund Open Until May 7 for Adults With Rare Diseases in US
The EveryLife Foundation for Rare Diseases is accepting applications for a scholarship program that aims to ... -
Scleroderma Foundation Awards 8 Grants to Advance Research Priorities
The Scleroderma Foundation has awarded eight research grants for projects seeking to advance personalized medicine, ... -
Galectin‐10 Blood Levels Linked With Inflammation, Lung Remodeling in Study
Low levels of the galectin-10 protein (Gal-10) in scleroderma patients associate with inflammation and vascular changes ... -
New Computer Learning Tool 95% Accurate in Screening for SSc
Using a laptop, a computer-based machine learning tool was able to distinguish, with 95% accuracy, normal ... -
During Flare-ups, My Scleroderma Body Pauses Life
Messy is the best word I can use to describe a flare-up caused by scleroderma. ... -
Actemra, Given Early to SSc-ILD Patients, Preserves Lung Health, Trial Data Show
CT scans show that Actemra (tocilizumab) can prevent lung disease in patients with systemic scleroderma ... -
Cost of Rare Diseases in US? Nearly $1 Trillion in 2019, EveryLife Foundation Finds
As anyone affected by a rare disease knows, treating the illness while trying to go ... -
Applications Sought for Foundation Scholarships
The Anna Belle Carter Memorial Foundation (ABCMF) is offering scholarships to students living with scleroderma ... -
Pain, Poor Sleep Can Lead to Lower Quality of Life for Patients
Chronic pain and impairment of the autonomic nervous system — which controls internal organs and ... -
CAN10 Shows Promise in Early Studies, Supporting Planned Clinical Trial
CAN10, — Cantargia’s experimental therapy for scleroderma and myocarditis, or inflammation of the heart muscle ... -
C21 Improved Blood Flow in People With Raynaud’s Secondary to Scleroderma
Oral treatment with C21 restored hand temperature by improving blood flow in people with Raynaud’s phenomenon ... -
Sleeping on an Inclined Bed Leads to an Enormous Wedgie
The room is dark. My feet are tingling with pins and needles as they dangle ... -
Scleroderma May Impair Ability to Eliminate Excess Cholesterol
People with scleroderma have abnormal levels of several fatty molecules and their body’s ability to ... -
Lung Involvement Increases Patients’ In-hospital Risk of Death, Costs
Having lung involvement increases the risk of in-hospital mortality, the length of hospital stays, and the ... -
FDA Approves Actemra to Treat Adults With SSc-ILD
The U.S. Food and Drug Administration (FDA) has approved Actemra (tocilizumab) to slow lung function ... -
Pink, Green, Blue and Purple Lights Illuminated World for Rare Disease Day
Many diseases have their own awareness color — breast cancer is pink, muscular dystrophy is ... -
Stem Cell Transplant Seen to Aid Skin and Lung Health in Severe SSc
A stem cell transplant can lessen skin thickness and improve lung function in people with ... -
ANCA‐associated Vasculitis Found to Cause Nerve Damage in SSc Patient
An elderly woman with scleroderma limited to her skin also developed the autoimmune disorder ANCA‐associated ... -
Rare Disease Day ‘Patient Hero’ Raises Awareness Through Fashion
Diagnosed with sickle cell disease as a 6-month-old, Tristan Lee has faced a lot of ... -
Lower Back Pain Likely Drives Chronic Pain in Early Stages of Scleroderma
Although not a distinctive symptom of scleroderma, lower back pain is a major contributor to ... -
This Rare Disease Day, I’m Asking Others to Help Us Be Less Rare
“You’re imperfect, and you’re wired for struggle, but you are worthy of love and belonging.” ... -
Corticosteroids Plus Rituximab Not Likely to Injure Kidneys of SSc Patients
High doses of corticosteroids may be given alongside rituximab, used at lower doses, without affecting ... -
Rare Disease Day at NIH, Set for March 1, Growing Year by Year
Rare Disease Day at NIH, organized by the National Institutes of Health (NIH) and taking place ... -
Eurordis Survey: Healthcare Experience Worse for Rare Disease Patients
People with rare disorders have a worse healthcare experience than those affected by chronic diseases, ... -
Poor Core Stability Evident in SSc Patients, Affecting Life Quality
Patients with scleroderma have poor core stability, as measured by trunk muscle strength and endurance, ... -
Fatigue, Raynaud’s Among Top Barriers to Exercise, Survey Finds
Common barriers to physical activity in people with scleroderma range from fatigue and poor hand dexterity ... -
FDA Grants Priority Review to Esbriet for Unclassifiable Interstitial Lung Disease
The U.S. Food and Drug Administration (FDA) has accepted and granted priority review to an ... -
Ziritaxestat Clinical Trials Discontinued
Galapagos NV and Gilead Sciences are discontinuing all clinical trials with the investigational medication ziritaxestat. ... -
Pandemic Won’t Stop Rare Disease Day on Feb. 28
Scores of virtual events are afoot around the world to mark Rare Disease Day 2021 ... -
Autoantibodies Against Telomeres May Help Identify SSc With Lung Disease
Autoantibodies against proteins of the telomeres — the protective caps of chromosomes and a marker ... -
Work-related Crystalline Silica Exposure Linked to Higher Scleroderma Risk
In a study of the entire working population of Denmark, exposure to respirable crystalline silica — ... -
NORD’s 6th ‘State Report Card’ Notes Progress, Raises Concerns
While progress was made last year on newborn screening and other policy issues critical to ... -
How to Endure the Torture of Esophageal Testing
When something gets stuck in your throat, you’ll do everything imaginable to dislodge it. That’s ... -
Tiny RNA Molecule Found to Regulate Collagen, Fibrosis in SSc-ILD
A tiny RNA molecule called microRNA-320a is associated with regulating collagen levels and fibrosis, or ... -
Differences in Activity of Various Genes May Drive Scleroderma
Small genetic variations that alter gene activity could play a role in the development of ... -
B-Cell Depletion Therapy May Be Effective
Intensified B-cell depletion therapy (IBCDT) — administering immunosuppressants to lower the number of antibody-producing immune ... -
Digital Ulcers, Raynaud’s and GI Symptoms Can Diminish Life Quality
Three factors — the presence of digital ulcers, Raynaud’s phenomenon, and gastrointestinal (GI) symptoms — appear ... -
When My Disease Attacks, I Press the Reset Button and Move Forward
There’s an ugly truth about chronic illness. It hides from the rest of the world ... -
Finger Sweating Tests May Help Diagnose Scleroderma
Tests that measure finger sweating levels may be useful diagnostic tools to help physicians identify ... -
UK Rare Diseases Framework Opens to Improve Diagnosis, Access to Care
U.K. Rare Diseases Framework, a government-led approach to raising national awareness of rare disorders, accelerating ... -
TMB-003 Therapy to Reduce Scarring Wins FDA Orphan Drug Designation
Scleroderma treatment TMB-003, which aims to improve patients’ quality of life by reducing the scarring ... -
Blood Levels of Protein Common to Lungs May Mark Progression in SSc-ILD
A glycoprotein called Krebs von den Lungen‐6 (KL-6), known to indicate lung inflammation, shows promise ... -
Analysis: Therapies Equally Effective in African Americans with SSc-ILD
African Americans with interstitial lung disease (ILD) caused by scleroderma (SSc-ILD) had largely similar outcomes compared ... -
Acknowledging That This Time, I Need Help
Sometimes life deals a hand that tests us. We then look for ways to overcome ... -
Tracleer for Digital Ulcers Lowers PH Risk in Scleroderma, Study Finds
People with scleroderma who were treated with Tracleer (bosentan) to prevent digital ulcers — open sores ... -
Osteopontin Protein May Be Cause of Lung Scarring in Scleroderma
Osteopontin, a protein known to play a role in tissue regeneration, immune system regulation, and ... -
Scleroderma Patients at Higher Risk of Cardiovascular Diseases, Review Finds
People with scleroderma are at a higher risk of developing diseases that affect the heart ... -
Self-love Is the Best Love
Being a caregiver can be a huge balancing act. Some caregivers do this for a ... -
More Than 40% of Scleroderma Patients Have Bone Density Loss, Study Finds
More than 40% of scleroderma patients are diagnosed with osteopenia (loss of bone mass) or ... -
Brain Cancer Found in 2 Immunosuppressed Scleroderma Patients, Case Series Reports
Brain cancer associated with a viral infection was found in two people with scleroderma after ... -
Standing By My Mother During Health Challenges
As my mother’s caregiver, I had to learn how to be there for her without ... -
Meds or No Meds?
I used to save my empty pill bottles, thinking a Pinterest craft would catch my ... -
FDA Grants Orphan Drug Designation to ACE-1334 for Scleroderma
The U. S. Food and Drug Administration (FDA) has granted orphan drug designation to ACE-1334, an ... -
Documentary ‘Beyond Breathless’ Highlights Interstitial Lung Disease
A new documentary, “Beyond Breathless,” will showcase the journey of those affected by interstitial lung ... -
BioInvent to Produce CAN10, Cantargia’s Antibody for Scleroderma, Under New Deal
Cantargia‘s antibody CAN10, intended to treat people with scleroderma and myocarditis, will be produced by BioInvent under the ... -
Survey Finds COVID-19 Disrupted Care, Well-Being of Rare Disease Patients in Europe
The first wave of COVID-19 in Europe severely disrupted access to care and raised stress and ... -
Proteins Linked to Scarring, Immune Cell Activation Found at High Levels in dcSSc
Proteins involved in scarring and the escape of immune cells from blood vessels towards nearby ... -
LOX Enzyme May Serve as Scleroderma Biomarker, Therapeutic Target
The molecule lysyl oxidase (LOX) plays key roles in promoting skin and lung scarring in ... -
My Diagnosis Was Gut-wrenching, but Life Gets Better
The phone rang on a Friday night. I answered it thinking the call probably was ... -
Lenabasum Eases Pulmonary Decline in dcSSc Patients on Long-term Immunosuppressants, Trial Finds
Updated results from the RESOLVE-1 Phase 3 clinical trial show that treatment with lenabasum reduces lung function ... -
Long-term Ofev Safely Slows Lung Function Decline in SSc-ILD Patients, Trial Data Show
Long-term treatment with Ofev (nintedanib) safely and effectively slows lung function decline in adults with ... -
Can Someone Pass Me Life’s Handbook?
In my mom’s life, I am more than a caregiver. I became one at a ... -
Learning How to Recharge After Trauma
Coming home from the hospital should be a time of smiles and celebration — especially ... -
Ofev Slows Disease Progression in SSc-ILD, Data Shows, Supporting Therapy’s Benefits
Ofev (nintedanib) slows clinically relevant disease progression in adults with interstitial lung disease (ILD) associated with systemic ... -
Galectin-3 Protein May Be Blood Biomarker for Scleroderma and Like Diseases
Elevated blood levels of a protein called galectin-3 can help diagnose people with rheumatic diseases ... -
Genetic Profile Models Show Potential to Predict Person’s Scleroderma Risk
Genomic risk scores (GRS), which predict the likelihood of developing a condition based on a ... -
High Levels of S100A12 Protein May Increase Severity of Scarring, ILD, Study Suggests
Elevated blood levels of the S100A12 protein, a type of danger signal released by skin ... -
Overall Health Benefits Found With Abatacept in dcSSc Patients After 18 Months
Treatment with abatacept led to a reduction in skin stiffening and disability, as well as ... -
Machine Learning Helps Predict Stem Cell Transplant Outcomes, Study Suggests
Using a computer-based analysis to profile gene activity in blood samples may help identify the ... -
I’m Stronger Than Scleroderma
Who am I? On some days, I don’t know how to answer that question. But ... -
First Patient Treated in Trial Testing FCX-013 Gene Therapy for Localized Scleroderma
A Phase 1/2 clinical trial of FCX-013, Castle Creek Biosciences‘ experimental gene therapy for moderate to ... -
Stem Cell Transplant Improves Quality of Life in Scleroderma Patients, Study Indicates
Autologous hematopoietic stem cell transplant (AHSCT) — replacing patients’ damaged bone marrow with their own ... -
So You Wanna Talk About Mothers?
It’s challenging to inherit the mother’s role. Some moms fade in involvement as parents while ... -
Talaris Raises $115M for Clinical Trials Testing FRC001 Cell Therapy for dcSSc
Talaris Therapeutics has raised $115 million in financing, which will be used to support the ... -
AURORA Trial of CIVI030 for Raynaud’s Due to Scleroderma Resumes Patient Enrollment
A Phase 3 trial testing iloprost, known as CIVI030, for the treatment of Raynaud’s phenomenon ... -
Study: Pandemic Increases Anxiety, But Not Depression, in Scleroderma Patients
Following the onset of the COVID-19 pandemic, people with scleroderma experienced substantial increases in anxiety, but ... -
Capillary.io Software Aims to Make Diagnosing Scleroderma Easier, Faster
A new computer software, called Capillary.io, uses artificial intelligence (AI) to aid in diagnosing scleroderma at early disease stages. ... -
Study Suggests TL1A Protein as Therapeutic Target for Lung Fibrosis
A protein known as TL1A drives lung fibrosis, or scarring, in scleroderma, a new study suggests. ... -
Scleroderma More Severe in People With Muscle Involvement, Study Finds
Muscular involvement is linked with more severe symptoms in people with scleroderma, affecting heart, lungs ... -
Bob Saget, Susan Feniger to Host Oct. 18 Cool Comedy – Hot Cuisine, Benefiting SRF
Bob Saget will return to host the 34th annual Cool Comedy – Hot Cuisine fundraiser, benefiting the ... -
Rituximab Plus CellCept Durably Improves Lung Function in Refractory SSc-ILD, Study Suggests
Rituximab, in combination with CellCept (mycophenolate mofetil), reverses the decline in lung function in people ... -
Study Describes 12 Cases of Lung Cancer in Women With Scleroderma
Detailed characteristics of 12 cases of lung cancer in people with scleroderma were described in ... -
Lenabasum Fails to Show Efficacy in Diffuse Cutaneous SSc, Phase 3 Trial Shows
Treatment with lenabasum failed to outperform a placebo when given as an add-on to standard ... -
Enroll now for the Phase 2 Trial of CellCept Plus Esbriet for SSc-ILD
The Scleroderma Lung Study III (SLSIII), a Phase 2 clinical trial of oral CellCept (mycophenolate mofetil) alone ... -
Xperiome Platform Aims to Streamline Searches for Rare Diseases, Gain Patient Input
Raremark, an online rare disease patient community, has launched a digital platform called Xperiome, aimed ... -
Scleroderma Patients Lacking Hallmark Autoantibodies Form Distinct Subset
People with scleroderma who lack disease-related autoantibodies show a clinically distinct profile, which includes younger ... -
EveryLife Foundation Launches Scholarship Fund for Rare Disease Community in US
The EveryLife Foundation for Rare Diseases has launched a scholarship fund in the U.S. to ... -
Infections Needing Hospital Stay Costly for Scleroderma Patients in US
Pneumonia and sepsis are the most common serious infections among scleroderma patients needing hospitalization in the U.S., ... -
New Streaming Channel Showcases Rare Disease Films
When the COVID-19 pandemic forced the postponement of a rare disease film festival originally slated ... -
FLI1 Gene Variant Linked to Increased Scleroderma Risk, Greater Skin Thickness in Study
Long stretches of DNA repeats in the FLI1 gene — which gives instructions for a ... -
1st Patients Dosed, Enrollment Open in Phase 2a Trial of CBD Therapy EHP-101 for dcSSc
The first patients have been dosed in a Phase 2a clinical trial of EHP-101, Emerald ... -
Cell Therapy FCR001 to Enter Phase 1/2a Trial for Diffuse Cutaneous SSc
Talaris Therapeutics plans to initiate a Phase 1/2a trial to test its investigational cell therapy, ... -
Sleep Apnea Linked to High Blood Pressure in Lungs of Adults With Scleroderma
Obstructive sleep apnea (OSA) is associated with an increased risk of pulmonary hypertension in people with scleroderma, ... -
ACR CRISS Score a Reliable Measure of Therapy Effectiveness in dcSSc Patients
The American College of Rheumatology Combined Response Index in diffuse cutaneous systemic sclerosis (ACR CRISS) appears to be ... -
National Survey Seeks to Assess Full Social, Economic Burdens of Rare Diseases in US
The EveryLife Foundation for Rare Diseases has launched a nationwide National Burden of Rare Disease ... -
Orencia Shows Promise in Treating Localized Scleroderma in Children, Adults
Orencia (abatacept) — an approved medication for juvenile idiopathic arthritis and other inflammatory conditions — ... -
CellCept, Cyclophosphamide Both Improve Patient-reported Outcomes in SSc-ILD, Phase 2 Data Show
CellCept (mycophenolate mofetil) and cyclophosphamide can both improve the health-related quality of life of people ... -
Rheumatology Expert to Lead Scleroderma Program at Cedars-Sinai’s Kao Institute
Francesco Boin, a nationally recognized rheumatologist, has taken over as director of the division of ... -
Shear-wave Elastography May Best Capture Changes in Skin Stiffness
A form of ultrasound imaging called shear-wave elastography (SWE) is more sensitive for assessing changes ... -
Coalition Will Address Racial Disparities in Rare Disease Communities
The Black Women’s Health Imperative (BWHI) recently created a Rare Disease Diversity Coalition focused on ... -
Virtual Walks, Other Activities to Spotlight Scleroderma Awareness Month
Social distancing might thin the crowds, but it won’t stop the walks, runs, and other ... -
TLY012 Receives FDA Orphan Drug Status for Systemic Scleroderma
The U.S. Food and Drug Administration has granted orphan drug designation to Theraly Fibrosis’ TLY012 ... -
COVID-19 Delaying Rare Disease and Gene Therapy Trials, Pharma Execs Say
While the ongoing COVID-19 pandemic won’t have much of an impact on cash available for ... -
Experts Issue Guidance for Care of Scleroderma Patients During COVID-19
With the World Scleroderma Foundation (WSF)’s support, experts worldwide answered questions in the form of ... -
Rare Diseases Clinical Research Network Opens Online Survey on COVID-19
The Rare Diseases Clinical Research Network (RDCRN) has opened an online survey to better understand ... -
Lenabasum Use Seen to Lessen Inflammation, Fibrosis in Phase 2 dcSSc Trial
Treatment with lenabasum is safe and leads to clinically meaningful improvements in people with diffuse ... -
Early Use of Triple Combo Seen to Treat Diffuse Cutaneous Scleroderma
A triple combination of prednisolone, cyclophosphamide and plasma exchange (plasmapheresis) was effective against skin thickening in ... -
Surge in Telemedicine One ‘Good’ Outcome from COVID-19 Crisis, Doctors Say
While there are few silver linings to the cloud created by COVID-19, the pandemic that ... -
Ofev Approved in Europe for SSc-ILD Treatment in Adults
The European Commission has approved Ofev (nintedanib) to preserve lung function in adults with systemic ... -
Blocking CCR2 Protein May Ease Scleroderma Symptoms, Mouse Study Suggests
Blocking the CCR2 protein reduced dermal tightening, lung fibrosis (scarring), and the infiltration of immune ... -
Horizon Plans to Advance Oral dcSSc Therapy in Trials, Having Acquired Curzion
Horizon Therapeutics announced it plans to pursue the development of HZN-825, a potential therapy for ... -
Phase 2 Trial to Test Cannabidiol-derived EHP-101 in Diffuse Cutaneous Scleroderma
Emerald Health Pharmaceuticals has launched a clinical trial evaluating EHP-101, its investigational cannabidiol-derived therapy, in ... -
Canada Clears EHP-101, Possible Cannabidiol-derived Treatment
The active ingredient in EHP-101 — known as VCE-004.8, derived from synthetic cannabidiol — is not classified ... -
Subset of Immune B-Cells Linked to Vascular Damage in Some Patients, Study Suggests
Levels of a subtype of immune B-cells in the blood are increased in some people ... -
Vitamin E, Pentoxifylline and TheraBite System Ease Lockjaw, Small Study Suggests
Using vitamin E, pentoxifylline, and the TheraBite Jaw Motion Rehabilitation System may help reduce trismus ... -
With Scleroderma, Exercise Comes at a Cost
My cardiologist has given me the OK to go back to the gym. I’ve been ... -
Finding the Glimmer of Gold Amid the Sludge of Scleroderma
It has been a long few weeks of dealing with recurrent benign paroxysmal positional vertigo ... -
Grappling with My Identity as a Scleroderma Patient
It’s been an eventful couple of weeks. I am currently dealing with several crises at ... -
When Choosing My Medical Team, It’s All About Attitude
In my last column, I promised to share my experience with a new cardiologist, as ... -
Finding Hope in the Hospital Despite Adversity
Last week began like any other. I usually play catch-up on Monday, my favorite day ... -
Puzzles Enable Me to ‘Armchair Travel’ with Scleroderma
I complete many jigsaw puzzles as I rest in my recliner. I find puzzles to ... -
Navigating the Uncharted Waters of Scleroderma
I like to read online about how other patients experience systemic scleroderma, especially when I ... -
Is a ‘Normal Life’ Possible with Scleroderma?
This morning I went for a walk. I’m trying to introduce this daily activity into ... -
How I’m Surviving My Worst Waiting Room
I’ve had a rough run lately. Three separate kidney infections, medications to treat them, and ... -
My Scleroderma Seminar Trip Was Just What the Doctor Ordered
The last two weeks have been extremely challenging. Living the scleroderma lifestyle means I never ...