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Staying Honest and Motivated While Living With Sarcoidosis
Let’s be honest … Ok, I’ll be honest. I’ve found that being honest with myself ...
More from Sarcoidosis News
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OMRF Opening Study Into Onset and Progression of Sarcoidosis
People with sarcoidosis are being asked to donate blood samples and information related to their disease ... -
The Benefits I’ve Found With One-stop Healthcare
People are always surprised to hear that I travel from Pennsylvania to Ohio for medical ... -
Don’t Allow the Anxiety From Sarcoidosis to Limit Your Life
Like many of us dealing with sarcoidosis, I’ve somewhat mastered contentment doing nothing. Over the ... -
Patients With Impaired Lung Function May Have Higher Risk of Severe COVID-19
People with sarcoidosis who have impaired lung function seem to be at greater risk for ... -
Battling the Insecurities of Chronic Illness
Day is breaking and my uncertainty unfolds. If I’m lucky, I’ll silence it with a ... -
The More You Know About Sarcoidosis, the Better You’ll Be
In order for me to do better, I have to do better for myself. That’s ... -
Sarcoidosis Linked to Higher Risk for Some Pregnancy Complications, Study Shows
Sarcoidosis is associated with a higher risk for certain complications in pregnancy, according to data ... -
Regaining Control of My Life Through Self-improvement
When my family was caring for me, they got to witness my many endeavors at ... -
Same But Different Photo Contest Celebrates People With Rare Diseases
Same But Different, a U.K. nonprofit that uses the arts to bring communities together, is ... -
Dare to Be Your Best While Living With Sarcoidosis
I am so tired of the overly used phrases “the new normal” and “we’re all ... -
Unique Protein Patterns Found in Sarcoidosis Lungs, Study Finds
A large-scale analysis of proteins in bronchoalveolar lavage cells and fluid isolated from the lungs ... -
Employment Hurdles Grow for People With Disabilities
It may be odd to loathe an inanimate object, but I do. I didn’t always. ... -
Sarcoidosis Doesn’t Stop You From Enjoying Simple Pleasures
Discipline is a trait that takes determination to mature into an art. By nature, we’re ... -
FSR Small Grant Awarded for Development of Sarcoidosis Mouse Model
A grant from the Foundation for Sarcoidosis Research (FSR) will fund the development of a ... -
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 ... -
Choosing the Best Path to Managing a Disease
With 8 a.m. closing in on a weekday, diners had already filled tables set up ... -
Focusing on Improvement While Living With Sarcoidosis
Over the past few weeks, I had appointments with both of my pulmonologists involving follow-up ... -
Neurosarcoidosis Linked to Spinal Inflammation, Fluid in Brain in Case Report
Although neurological symptoms are rare in people with sarcoidosis, physicians should consider neurosarcoidosis in cases of ... -
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 ... -
National Wellness Month Is More Than Diet and Fitness
In May, I read about a poll of 2,000 Americans who reported using excuses an ... -
We Can Overcome Sarcoidosis’s Mental Stranglehold
A chronic health condition like pulmonary sarcoidosis can have a mental stranglehold on a person, ... -
Sarcoidosis in Children May Require Treatment Into Adulthood, Study Says
Pediatric-onset sarcoidosis may require long-term treatment, and can be associated with severe consequences in adulthood, according ... -
New Nutrition Labels on Packaged Food Are Worth a Look
If your supermarket routine is like mine, you zip in and out of stores without ... -
New Streaming Channel Showcases Rare Disease Films
When the COVID-19 pandemic forced the postponement of a rare disease film festival originally slated ... -
Don’t Allow Sarcoidosis to Deter Your Dreams
This weekend I’ll be celebrating an anniversary. Actually, it’s more like a milestone. Although it ... -
New Guidelines for Cardiac Sarcoidosis in Japan Yield Higher Number of Diagnoses
New diagnostic guidelines for cardiac sarcoidosis yield a higher number of diagnoses and identify more ... -
Leaving Supermarkets Behind to Reduce COVID-19 Risk
I used to enjoy grocery shopping. The retail circulars that hit my mailbox on Fridays ... -
Self-determination Led to Progress As I Dealt With Sarcoidosis Setbacks
Two years ago this week, I was in the hospital suffering from crepitus. I didn’t ... -
Protalix, SarcoMed USA Enter Non-binding Deal for Potential Sarcoidosis Treatment
Protalix BioTherapeutics and SarcoMed USA have entered into a non-binding agreement related to the development ... -
Bouncing Back from Unexpectedly Losing Health Insurance
When I was fired years ago while battling sarcoidosis on unpaid sick leave, I was ... -
Thankfully, I Am Not Alone on This Journey
This week, my wife and I will be celebrating our 22nd wedding anniversary. As only ... -
Certain Metals, Silica Can Cause Immune Response in Sarcoidosis, Study Finds
More than 20% of sarcoidosis patients show signs of an immune system response against aluminum, ... -
The Mistake That Can Hamper Your Disease Management Efforts
Sarcoidosis involves the lungs in most cases, so you may head to a pulmonologist and ... -
Using a Healthy Diet to Treat Sarcoidosis
A few months ago I had a conversation with someone who told me he was ... -
Women With Sarcoidosis Have Higher Mortality Risk From Heart Problems, Study Suggests
Women with sarcoidosis are more likely to die in hospital from heart complications and also ... -
Small Fiber Neuropathy Is Going Undiagnosed in Sarcoidosis
With 92 degrees forecast, I headed out for a walk Thursday morning to beat the ... -
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 ... -
After Celebrating My Birthday, I’m Focused on Self-improvement
I accomplished a few things that I’m proud of this past week. I finally finished ... -
Worse Physical Condition, Lung Function Predict Shorter Lives Without Transplant in SAPH Patients, Study Finds
People with sarcoidosis-associated pulmonary hypertension who have reduced physical fitness or worse gas exchange capacity ... -
My New Vegetarian Diet Has Brought Sarcoidosis Pain Relief
My Fourth of July celebrations always include barbecue, but not this year. I made the ... -
Foundation Seeking Members for New Patient Advisory Committee
People living with or affected by sarcoidosis are invited to apply for membership in the ... -
Breathing Polluted Air Is the Deadly Norm for Many
With stifling June heat and pollen cleared by rainfall, I opened my windows. Drivers finished their ... -
This Father’s Day Reminded Me of a Valuable Lesson
Father’s Day was always a good time for my family when I was growing up. ... -
Severe Fatigue Very Common in Pulmonary Sarcoidosis Patients, Dutch Study Shows
Severe fatigue affects more than 60% of pulmonary sarcoidosis patients and is associated with worse ... -
DIY Project Drills Home Important Sarcoidosis Lessons
A pile of boards and bolts stood before me as the first inkling of doubt ... -
Alexion Charitable Foundation Giving $1.1M to Assist Rare Disease Community During Pandemic
The Alexion Charitable Foundation has awarded $1.1 million in grants to programs that support those ... -
A Therapist Could Have Brought More Peace to My Hospitalization
Recently, I thought about my past hospitalizations and how isolated I felt. I guess the ... -
Adhering to Treatment Plan Linked to Higher Quality of Life in Sarcoidosis Patients
Sarcoidosis patients who more closely follow their established treatment plans were found to have a ... -
Putting Fears Aside to Resume Crucial Healthcare
I’ve avoided others throughout the pandemic because of my sarcoidosis. I had thought that if ... -
MRI ‘Patterns’ May Aid in Diagnosing Sarcoidosis Affecting the Spine
Sarcoidosis affecting the spinal cord tends to result in distinct patterns visible on MRIs of ... -
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 ... -
Long-term Telecommuting Could Benefit the Rare Disease Community
An employer once asked me what was the one wish I wanted granted. Having battled ... -
Sarcoidosis Doesn’t Define My Personal Progress
You are where you’re supposed to be — for now. Over the past three years, ... -
ATYR1923 Binds to NRP2 Protein Found at Key Immune Cells, Data Show
ATYR1923, a candidate therapy for pulmonary sarcoidosis, binds specifically to the neuropilin-2 (NRP2) receptor protein, ... -
Sarcoidosis Progress Continues Behind the Scenes
I spent the first hours of April poring through television news in the U.S. Not ... -
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 ... -
My Love Affair with Meat Hits a Rocky Patch
Sometimes in relationships flaws become too glaring to ignore, which either leads to compromise or ... -
Eurordis Urges Expansion of Newborn Screening Initiatives Across Europe
European authorities must step up efforts to screen babies for a multitude of genetic disorders, ... -
Living with Sarcoidosis Can Change Your Thinking for the Better
I once heard an old man say that “a changed mind is a dangerous thing.” ... -
Unity and EU-wide Efforts Focus of Online Rare Disease Meeting
Eurordis, a Paris-based coalition of national rare disease associations across Europe, hosted its first all-virtual ... -
The Season of Sneezing Is Upon Us
Runny nose, sneezing, coughing, and itchy, watery eyes. Getting a breath of fresh air ain’t ... -
Sarcoidosis Does Not Increase Risk of Worse COVID-19 Outcomes, Early Survey Data Show
Sarcoidosis, and the medications prescribed to patients with the disease, do not lead to worse ... -
Lingering Questions About Lyme Disease
I felt vindicated last year when researchers reported Lyme disease could potentially trigger sarcoidosis. I’ve ... -
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 ... -
I’m Quarantine Ready, Thanks to Sarcoidosis
I’ve been managing all right while being holed up alone since mid-March. But when I ... -
Chitotriosidase Enzyme May Be Indicator of Sarcoidosis Activity, Severity
An enzyme called chitotriosidase appears to be a reliable biomarker of sarcoidosis, a study suggests. ... -
We’re Stronger Than We Think
Every day is a new adventure, and this pandemic certainly has been challenging. Every morning, ... -
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 ... -
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American Thoracic Society Publishes Guidelines to Help Clinicians Diagnose Sarcoidosis
The American Thoracic Society has published its first official guidelines for how best to detect and ... -
NORD Opens COVID-19 Financial Aid Program for Rare Disease Community
The National Organization for Rare Disorders (NORD) has opened a financial assistance program for people ... -
Less Streaming and More Books Is My Recipe for Better Health
My timing has been abysmal lately. Take for instance my purchase of an all-wheel-drive car ... -
Blood Levels of Anti-Inflammatory Protein High in Patients, Study Finds
Adiponectin, an anti-inflammatory protein produced by adipose tissue, was seen to be elevated in the blood ... -
Coping with Sarcoidosis, COVID-19, and the Loss of a Partner
This has been one of my most difficult weeks in many years! For four weeks ... -
National Minority Health Month Misses the Mark in 2020
National Minority Health Month got underway in the United States on April 1 with the ... -
NIH $1.98M Grant to Help Develop Easier Way of Diagnosing Sarcoidosis
The National Heart, Lung, and Blood Institute, part of the National Institutes of Health (NIH), ... -
Are Sarcoidosis and COVID-19 Stressing You Out?
Sensory overload! I’ve already completed my 15 days of self-quarantine and I’m ready to get ... -
Getting Creative Despite Feeling Blue
It’s difficult not to feel at least a little blue in the midst of this ... -
Laughter Is the Medicine You Won’t Mind Taking
I’ve noticed that when doctors pitch something that will be good for my health, what ... -
Joint Campaign to Raise Awareness About Sarcoidosis and COVID-19
The Foundation for Sarcoidosis Research is partnering with the American Lung Association for its sixth ... -
NORD Partners with ‘Sing Me a Story’ for July 18–20 Living Rare Forum
The Living Rare, Living Stronger Patient and Family Forum, originally set for May 14–16 in ... -
Changing Tactics for National Sarcoidosis Awareness Month
National Sarcoidosis Awareness Month begins on April 1 without the fanfare of years past. We ... -
Pandemic Likely to Delay Results of Trial into Pulmonary Sarcoidosis Treatment
Results of a Phase 1b/2a clinical study evaluating ATYR1923 in people with pulmonary sarcoidosis are likely ...