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The F-words I’m Focusing on Following My Fracture
No, not that one. The other day, I Fell and Fractured my Foot (though I ...
More from Sarcoidosis News
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Speakers’ Bureau of 14 ‘Experts’ Living With Sarcoidosis Opens at FSR
A Patient Speakers’ Bureau is opening at the Foundation for Sarcoidosis Research (FSR) to advocate on behalf ... -
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 ... -
Trial of ATYR1923 in Pulmonary Sarcoidosis Patients Nears Finish
A Phase 1/2 clinical trial testing ATYR1923 in people with pulmonary sarcoidosis has now finished all required patient ... -
Float With Me: An Introduction to ‘Float Like a Buttahfly,’ a New Column
About 20 years ago I joined a program to lose weight, and ended up gaining ... -
Nominations Open for 2022 Eurordis Black Pearl Awards
Nominations are now open for the worldwide 2022 Black Pearl Awards from Eurordis-Rare Diseases Europe. ... -
New Guidelines Include Acthar Gel in Treating Pulmonary Sarcoidosis
The use of Acthar Gel (repository corticotropin injection, or RCI) was among medications noted by both ... -
Neurofilament Protein Is Promising Neurosarcoidosis Biomarker
A protein called neurofilament light chain (NFL), which supports nerve fibers, is elevated in adults ... -
A New Friend Taught Me to Never Fear Telling Our Stories
“Not everything that is faced can be changed, but nothing can be changed until it ... -
Xentria Readies First Trial of XTMAB-16 for Sarcoidosis
The U.S. Food and Drug Administration (FDA) has approved beginning clinical trials testing XTMAB-16, Xentria’s ... -
EveryLife Introduces First of Kind ‘Roadmap’ to ICD Codes
To help patient advocacy leaders and their partners better understand how global health statistics codes ... -
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 ... -
Getting Stuck in a False Comfort Zone
“The secret of change is to focus all of your energy not on fighting the ... -
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 ... -
FSR Awards $150K to Study Role of Microbes in Neurosarcoidosis
A researcher investigating pathogens — disease-causing microorganisms — capable of causing neurosarcoidosis has been awarded ... -
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 ... -
FSR’s Women of Color Committee Seeks Applicants
African American women diagnosed with sarcoidosis or who have strong connections to the sarcoidosis community, ... -
Before You Say Goodbye to Face Masks, Determine the Risk
As a teen, I got a T-shirt from my best friend that said “Me, paranoid? ... -
We Had Big Plans for Mother’s Day, but I Ended up in the Hospital
Mother’s Day was a couple weeks ago here in the U.S., but I must admit, ... -
Rare Case of Sarcoidosis in Spleen Diagnosed via Tissue Analysis
A rare case of sarcoidosis affecting only the spleen was successfully diagnosed using tissue analysis, ... -
The Highs and Lows of Becoming a Vegetarian Last Year
My memory is terrible. But I can vividly recall hovering over a rib-eye steak in ... -
Switch From Remicade to Newer Biosimilar Safe for Sarcoidosis, Study Finds
People with severe and difficult-to-treat sarcoidosis can safely switch from Remicade (infliximab) or its biosimilar Inflectra, to ... -
Personal Coaching Makes a Big Difference When Exercising With Sarcoidosis
Seeing actor Will Smith post that he was in the worst shape of his life ... -
My Aunt’s Wisdom Has Helped Me Become More Disciplined
“Discipline is the bridge between goals and accomplishments.” – Jim Rohn Last weekend was really ... -
Despite COVID Vaccinations, Caution Still Crucial for Transplant Recipients
Long before COVID-19 changed the world, organ transplant recipients were wearing masks to shield themselves from ... -
Tickets on Sale for Foundation for Sarcoidosis Research June Summit
The Foundation for Sarcoidosis Research (FSR) is holding a two-day virtual patient education summit focused on ... -
Allergy Seasons Are Getting Worse. Here’s How to Fight Back
I miss the days when a sneeze was nothing to worry about. Especially after I ... -
$50,000 Grant to Support Study of Specific Immune Cells in Sarcoidosis
A professor at Northwestern University has been awarded a $50,000 American Thoracic Society (ATS)/Mallinckrodt Pharmaceuticals Research ... -
Is Your Neighborhood Lung-friendly? New Study Provides the Answer
With views of trees from every window, pollution never crossed my mind when I signed ... -
Managing Stress While Facing an Unpredictable Future With Sarcoidosis
“If you’re not nervous, you’re not paying attention.” – Miles Davis Over the past few ... -
Short In-hospital Exercise Program Found to Improve Patient Health
A short, in-hospital exercise program was found to decrease the levels of fats, or lipids, ... -
Quick Approval Given COVID Vaccines Raise Concerns, Rare Disease Patients Say
More than half of the people with rare diseases and their caregivers, asked in a ... -
Fighting Back Against Sarcoidosis, One Step at a Time
I’ve often felt like I’m just along for the ride when it comes to sarcoidosis. ... -
Exercise and Staying Active Are Crucial to Sarcoidosis Management
The last day of pulmonary rehab is upon me. Truth be told, it’s bittersweet. This ... -
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 ... -
Smooth Sailing After My First COVID-19 Vaccine Shot
Eyelids fluttering open to a new day, I mentally searched my body for signs that ... -
Sarcoidosis Advocate Appointed Patient Advisor at aTyr
aTyr Pharma, which is developing a candidate therapy for pulmonary sarcoidosis called ATYR1923, has appointed Andrea ... -
Carl Jung Helped Me Understand the Pitfalls of Sarcoidosis
“I am not what happened to me, I am what I choose to become.” — ... -
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 ... -
This April, Celebrate Sarcoidosis Awareness Month
From taking part in a virtual endurance challenge to joining in a virtual cooking class, ... -
Let’s Show the Many Faces of Sarcoidosis This Awareness Month
I stumbled upon sarcoidosis in 2002, and still wake each morning wondering what’s in store. It ... -
Sarcoidosis Left Me Feeling Fractured, Broken, and Like a Work in Progress
Is the image of the person looking back at you in the mirror someone who’s ... -
Virtual Vigil Planned as Part of Sarcoidosis Awareness Month
April is Sarcoidosis Awareness Month and the Foundation for Sarcoidosis Research (FSR) is holding a virtual ... -
Do Long-haul COVID-19 Patients Provide Clues for Sarcoidosis Treatment?
Since the novel coronavirus emerged, what’s increasingly struck me are the eerie similarities between COVID-19 ... -
Low Monocytes Levels May Predict Remission, Slowed Disease Progression
Cells of the innate immune system called monocytes can be useful biomarkers to predict the ... -
The Struggle to Feel Seen and Heard With Sarcoidosis
Can you hear me? Do you see me? I repeat these two phrases at least ... -
The First Hurdle to Clear to Get in Shape Is Often Fear
I was in my 40s when I entered a neighborhood gym for the first time. ... -
Being Saved by Grace Helps Me Live Courageously With Sarcoidosis
“Grace means that all of your mistakes now serve a purpose, instead of serving shame.” ... -
Low Lymphocytes Levels Can Help Diagnose Active Sarcoidosis
An association has been found between active sarcoidosis, inflammation, and the presence of low levels of ... -
While You Wait for Normal to Return, Check Out These Sarcoidosis Events
Envy is a terrible thing. But three months into the year, I can no longer ... -
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 ... -
Stress, Fear, and Sarcoidosis: You Have the Tools to Deal With It
At this time last year, I was in the hospital. I spent three days there, ... -
Xentria Seeks to Begin Clinical Trial of XTMAB-16
Xentria is seeking regulatory approval to begin clinical trials to test XTMAB-16, its investigational TNF-alpha ... -
The Early Bird Wins (I Hope) When It Comes to Daylight Saving Time
I view my biological clock as a stubborn, old mule. She dictates her pace, and ... -
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 ... -
Adults Sought for Sarcoidosis Inflammation Study
The Foundation for Sarcoidosis Research is urging adults with sarcoidosis to participate in a new ... -
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 ... -
Help Tackle Sarcoidosis by Speaking Up on Rare Disease Day
We sat just a few feet apart, trying to figure each other out. He jotted ... -
Protalix, SarcoMed Partner to Advance PRX-110 for Pulmonary Sarcoidosis
Protalix Biotherapeutics and SarcoMed USA have entered into an exclusive worldwide license agreement to advance ... -
Eurordis Survey: Healthcare Experience Worse for Rare Disease Patients
People with rare disorders have a worse healthcare experience than those affected by chronic diseases, ... -
Remission Doesn’t Always Mean the End of Symptoms
I know playing “what if” is a useless exercise when it comes to sarcoidosis. But ... -
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 ... -
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 ... -
Victories Are Sweeter When You Have to Work Hard for Them
Many call it “heart attack snow.” It’s heavy. It’s backbreaking. Last week, we went head-to-head. ... -
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 ... -
Inflammation Limited to Front of Eye Can Aid Recovery in Ocular Sarcoidosis
Recovery for people with ocular sarcoidosis is more likely if anterior uveitis — inflammation in front of ... -
Why You Need to Know About Cardiac Sarcoidosis Screening
My physician’s index finger slid across the X-ray, briefly stopping in areas to indicate the ... -
We Learn About Ourselves When Learning About Others
“I can be changed by what happens to me. But I refuse to be reduced ... -
Relief Will Acquire Rights to Potential Sarcoidosis Therapy RLF-100 in Deal
As part of a new agreement with AdVita Lifescience, Relief Therapeutics will acquire the intellectual ... -
COVID-19 Vaccines Pose Little Risk to Rare Disease Patients, FDA, CDC Say
The two COVID-19 vaccines that recently received emergency approval from the U.S. and other worldwide ... -
Unlike Before, I Now Take the Time to Enjoy Life
Slowing down has always been hard for me. As a kid, I’d squirm out of ... -
NORD’s Caregiver Respite Program Continues Through Pandemic
Caring for a loved one with a rare disease, especially during these uncertain times, demands ... -
What I Want My Loved Ones to Understand About Sarcoidosis
Dear family, friends, and caregivers, First, I want to thank you for being people I ... -
3 Reasons to Find a New Doctor
The more visits I have with a physician, the harder it is to cut ties. ... -
‘Endureth All Things,’ as the Outcome May Surprise You
“Beareth all things, believeth all things, hopeth all things, endureth all things.” – 1 Corinthians ... -
Include Pulmonary Sarcoidosis in Chest Pain Diagnosis, Case Report Advises
A case study diagnosing pulmonary sarcoidosis in a patient complaining of chest pain and shortness ... -
NORD Seeks Speakers for 2021 Virtual ‘Living Rare, Living Stronger’ Forum
The National Organization for Rare Disorders (NORD) is seeking individuals willing to share real-life experiences ... -
Weighing the Risks and Benefits of COVID-19 Vaccines
I never liked group projects in school. Whenever one was announced, I’d groan and silently ... -
Bird-related Lung Disease Seen to Affect Japanese Man’s Sarcoidosis
Researchers in Japan reported a case of sarcoidosis associated with a specific bacterium and complicated ... -
Relieve Stress With This Alternative to New Year’s Resolutions
I usually set goals for the year when January arrives. Not this time. I’ve decided ... -
Tackle This Year-end Health Checklist Before 2021 Arrives
If your holiday shopping is done, indulge in some goodies and rejoice. Hopefully, I’ll be ... -
Cancer Patients With Sarcoidosis-like Granulomas More Likely to Survive
Although uncommon, some people with cancer will develop granulomas, the clumps of immune cells that ... -
Take Control of Your Health by Controlling Yourself
Have you ever experienced a moment in which you just knew you were right about ... -
TNF-alpha Inhibitor XTMAB-16 Granted FDA’s Orphan Drug Designation
The U.S. Food and Drug Administration (FDA) has granted orphan drug designation to XTMAB-16, Xentria’s ... -
Why Medical Appointments Should Be a Priority, Even Now
It usually takes me six months or longer to land an appointment with my neurologist. ... -
Don’t Wait Until Tomorrow, You May Be Disappointed
I lost my mother two weeks after I had surgery to remove nasal polyps. She had ... -
Antibiotic Azithromycin Curbs Cough in Pulmonary Sarcoidosis, Study Concludes
Three months of treatment with the common, generic antibiotic azithromycin safely reduced the number of ... -
Battling the Winter Fitness Slump
We’re 13 days from the start of winter. Try telling that to my body, which ... -
Practicing Mental Diligence and Enjoying Life
I don’t know about you, but I’m exhausted! This has been a year for the ... -
NORD Push for Rare Disease Advisory Councils Focus of Dec. 16 Public Meeting
To empower and equip members of the rare disease community to engage state leaders in ... -
Celebrating the Holidays Without the Risk
I used to stubbornly hang on to old ways of doing things. Sarcoidosis cured me ... -
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 ... -
Participating in Medicare Open Enrollment Is Crucial This Year
If you have reviewed your Medicare coverage options for 2021, pat yourself on the back. ... -
Expect the Unexpected When Receiving Second Opinions
Second opinions are a welcome hope! I received one for the first time this week, ... -
Latest NORD Webinar Offers Insights on Starting Nonprofit, Patient Registry
Leaders in the U.S. rare disease community came together recently for a webinar to present ... -
FSR Offers Patient Webinar Workshops on Mindfulness, Meditation Techniques
The Foundation for Sarcoidosis Research (FSR) is launching a series of mindfulness and meditation workshops ... -
A Healthy Streak I Would Like to Continue
Right around this time last year, I was cobbling together homemade chicken soup to get ... -
Corticosteroids Prescribed Most for Sarcoidosis in US, Study Shows
Corticosteroids, a type of anti-inflammatory medication, is the most-prescribed treatment for people with sarcoidosis, a ... -
Medical Marijuana Costs May Make You Think Twice
Last week, voters successfully nudged a handful of states into expanding opportunities to buy marijuana ... -
University of Miami Health System Sarcoidosis Program Named Center of Excellence
The World Association of Sarcoidosis and Other Granulomatous Disorders (WASOG) and the Foundation for Sarcoidosis Research ... -
Will Your Employer Support You for Better or Worse?
You may or may not be a sports fan. But today’s NFL trade deadline is ... -
Using Willpower and Determination to Move Forward
It has been an interesting week. I was having a conversation with a friend about ... -
Case Study Reports Successful Strategy for Infertility Caused by Testicular Sarcoidosis
Testicular sperm aspiration for in vitro fertilization (IVF) is a successful strategy to overcome infertility ... -
Growth Begins at the Edge of Fear
With Halloween just days away, I’ve been thinking about fear. Not the holding-your-breath, muscle-clenching, waiting-for-horrors ... -
UK Organization ‘Same But Different’ Announces ‘Glimmer of Hope’ Photo Contest Winner
A photo of a bespectacled young boy, his red baseball cap slightly askew as he ... -
There’s No Safety in Numbers When You Live With Sarcoidosis
Many folks with chronic health issues have difficulty focusing on too much at any given ... -
Sarcoidosis Carries Higher Risk of Heart Failure, Study Suggests
Relative to the general population, people with sarcoidosis are at higher long-term risk of heart ... -
Finding Support in the Unlikeliest Places
A best friend from high school occasionally stops by to let my wife and me ... -
Study Furthers Understanding of Links Between Sarcoidosis and IBD
People with coexisting sarcoidosis and inflammatory bowel disease (IBD) have higher in-hospital rates of respiratory ... -
Tuning Back Into Happiness
Bad habits usually sneak up on me. I glide along thinking I’m in control until ... -
Leaving the Unhealthy Behavior Behind
My wife, my son, and I moved into our house in August 1996. The house ... -
3 Factors Seen to Raise Risk of Cardiac Sarcoidosis Relapse in Multi-year Study
Kidney involvement, heart wall abnormalities, and left heart failure were identified as risk factors for ... -
Same But Different Asks Public to Vote on ‘Glimmer of Hope’ Calendar Photos
Same But Different, a nonprofit U.K. group that uses art for social change, is inviting ... -
The Not-So-Obvious Threats to Lung Health
After being diagnosed with pulmonary sarcoidosis, I became a pro at protecting my lungs. Or ... -
Family Memories Remind Me That Sarcoidosis Doesn’t Own Me
In February, I wrote that sarcoidosis doesn’t play fair. Over the past few days, I’ve ... -
Swedish Study Links Exposure to Silica Dust to Increased Risk of Sarcoidosis
Exposure to inhaled silica dust appears to increase the risk of sarcoidosis among men 20 ... -
Hope Carries Me Through Chronic Disease Challenges
I went to bed in the fourth quarter of “Monday Night Football” with my brother ... -
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 ... -
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 ... -
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 ... -
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 ... -
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.” ... -
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 ... -
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 ... -
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 ...