CAR-T, Autoimmune Disease, and the Strange Hope of a One-Time Treatment A treatment built for cancer is now doing something that sounds almost unreal in autoimmune disease. In this episode, I talk through a story about CAR-T cell therapy, a woman whose body had been attacking her from multiple directions, and the uneasy hope that comes with hearing the words remissio...

CAR-T, built for cancer, is now showing unreal promise in autoimmune disease. In this episode, I reflect on remission, reset, and the fragile hope of recovery in unpredictable bodies. https://bit.ly/4vyenid #sarcoidosis #chronicillness

Kaleidoscope/SAM background with photo of book open to Brad DeMaagd's "Living with Neurosarcoidosis"

Kaleidoscope/SAM background with quote from Brad DeMaagd's "Living with Neurosarcoidosis": “This is not the life I saw back in my 20s, but it’s still my life. I take smaller steps to reach larger goals, but I keep reaching.”

“This is not the life I saw back in my 20s, but it’s still my life. I take smaller steps to reach larger goals, but I keep reaching.”
~Brad DeMaagd
Read Brad’s story (& 59 others) in Kaleidoscope: #RareDisease Stories
a.co/d/0e1Zcsar
🦋
#SarcoidosisAwarenessMonth #sarcoidosis #SarcoidStories

Really enjoying the Italian National Sarcoidosis conference. #sarcoidosis
Here is one of the major people in the field with a simple message: doctors should listen to their patients.

FLaB/SAM background with screenshot from Sarcoidosis News/Bionews column. Text reads When chronic illness life feels overwhelming, seek joy and support Sixteen medical appointments are just the beginning of my busy month Written by 🦋Kerry Wong | April 17, 2026 FLOAT LIKE A BUTTAHFLY

Between medical stuff, life stuff, and the state of the world today, I am (understandably) #overwhelmed. This week’s #Sarcoidosis News column focuses on what I’m dealing with and what I’m doing about it.
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#SarcoidosisAwarenessMonth #ChronicIllness #SpoonieSky
sarcoidosisnews.com/columns/when...

FLaB/SAM background with info about Sarcoidosis Awareness Month Seminar from Temple Health: Join the Temple Lung Center’s Sarcoidosis Program on Friday, April 24th for an educational seminar during Sarcoidosis Awareness Month. Experts from multiple specialties will share presentations on the diagnosis, management, and treatment of the disease. Friday, April 24, 2026 10:00 am - 12:00 pm ET Temple University Hospital – Main Campus (Philadelphia, PA) Participants may also attend virtually, via Zoom templehealth.org/about/events/2026-04-24-sarcoidosis-awareness-month-seminar

#SarcoidosisAwarenessMonth Seminar
Friday, April 24 | 10am - 12pm ET

Join @temple.edu Lung Center’s #Sarcoidosis Program for an educational seminar. Presentations on #diagnosis, management, and #treatment of the disease.
🦋
templehealth.org/about/events/2026-04-24-sarcoidosis-awareness-month-seminar

Sarcoidosis #Sarcoidosis

You Didn’t Deserve This: Sarcoidosis, Shame, and Letting Go of Guilt What happens when chronic illness shows up and your first instinct is to blame yourself? In this episode of Thoughts While Surviving Chronic Illness, Tate reflects on growing up with guilt, being taught to question himself, and how that old wiring followed him into life with sarcoidosis. This is ...

What if chronic illness makes you blame yourself? In this episode, Tate reflects on guilt, shame, faith, and living with sarcoidosis—and why illness is not punishment. https://bit.ly/4tJc3TA #sarcoidosis #chronicillness

SAM/snowflake background with photo of "Fallen Snowflake" Rodney Reese, a "Beautiful Face of Sarcoidosis"

Rodney was a legend in the community. He inspired, encouraged, and supported #sarcoidosis warriors with his spirit, his strength, and his heart. Rodney passed away in November 2021, but his legacy lives on in all of us.

Thanks to Allison for keeping him in our thoughts
💜🦋
#SarcoidosisAwarenessMonth

SAM/snowflake background with photo of "Fallen Snowflake" Bob Gross, a "Beautiful Face of Sarcoidosis"

Bob was a kind, warm, genuinely good man who fought bravely and advocated for the #sarcoidosis community. He passed away in September 2025, and is greatly missed.

Thanks to Allison for keeping him in our thoughts.
💜🦋
#SarcoidosisAwarenessMonth #BeautifulFacesofSarcoidosis #FallenSnowflake

Kaleidoscope/SAM background with photo of Sarcoidosis warrior Hanna Curtis

Kaleidoscope/SAM background with quote from Hanna Curtis: “After so long, I love it: I love my sarcoidosis. I love who it makes me because I would not be the strong person I am today without it.”

“After so long, I love it: I love my sarcoidosis. I love who it makes me because I would not be the strong person I am today without it.”
~Hanna Curtis
Read Hanna’s story (& 59 others) in Kaleidoscope: #RareDisease Stories
a.co/d/0e1Zcsar
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#SarcoidosisAwarenessMonth #sarcoidosis #SarcoidStories

FLaB/SAM background with quote from Sarcoidosis News column: "When we say 'look at me' with our purple hair and accessories, we're taking advantage of an opportunity. While we have your attention, we can share our experiences: what we feel physically, how we're limited by this disease, how that makes us feel, and what we need from others. And it's an opportunity for our friends, colleagues, and loved ones to say, 'I'm here with you, and I'm here for you." Kerry Wong Sarcoidosis News Columnist

From "The power of purple during #SarcoidosisAwarenessMonth":

"When we say 'look at me' with our purple hair and accessories, we're taking advantage of an opportunity."
💜🦋
sarcoidosisnews.com/columns/power-purple-during-sarcoidosis-awareness-month
#sarcoidosis #awareness #community #SpoonieSky

Hoy es Día Mundial de Concienciación de la #Sarcoidosis.

ANES - Asociación Nacional de Enfermos de Sarcoidosis ANES pretende difundir la existencia de la Sarcoidosis para un mayor conocimiento social y para promover el estudio y la investigación de sus causas, desarrollo y tratamiento.

Hoy es el Día de la Concienciación de la #Sarcoidosis

Todo nuestro apoyo a quienes conviven con esta enfermedad. Investigar y visibilizar es vital para mejorar su calidad de vida.

Infórmate más en 👉 anes.org.es

#DíadelaSarcoidosis #Purpurizate

FLaB/SAM background with Caring Hands logo and photo of Allison Walker Beautiful Faces of Sarcoidosis All month long, Caring Hands Sarcoidosis Foundation is sharing the Beautiful Faces of Sarcoidosis, showcasing and honoring sarcoidosis warriors everywhere. It’s not too late to add your beautiful face to the campaign! Send your photo and brief narrative (your sarc story, a quote, or a message for the sarcoidosis community) to Allison at SarcoidNetwork1@gmail.com.

Caring Hands Sarcoidosis Foundation is sharing the #BeautifulFacesofSarcoidosis, showcasing and honoring #SarcoidosisWarriors everywhere.

Send your photo & brief narrative (sarc story, quote, or message for the sarc community) to SarcoidNetwork1@gmail.com.
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#SarcoidosisAwarenessMonth #sarcoidosis

FLaB/SAM background with text: Empowering the Patient Journey: Living Well with Sarcoidosis A free virtual conference for patients, families, caregivers, and clinicians designed to inform, inspire, and support a healthier, more hopeful life with Sarcoidosis. Saturday, April 25, 2026 1:00 - 5:00 pm ET Join me and an incredible lineup of leading medical experts for an afternoon of information, inspiration, and guidance to live well with sarcoidosis. sarcoidosisri.org/empowering-the-patient-journey-living-well-with-sarcoidosis

Empowering the Patient Journey:
Living Well with #Sarcoidosis

For patients, families, caregivers, and clinicians
Designed to inform, inspire, and support a healthier, more hopeful life with #sarcoidosis.

Saturday, April 25, 2026 | 1:00 - 5:00 pm ET
🦋
sarcoidosisri.org
#SarcoidosisAwarenessMonth

Kaleidoscope/SAM background with photo of Cheryl Bradford holding a copy of the book

Kaleidoscope/SAM background with quote from Cheryl Bradford: “Because of how quickly life moves, it is easy sometimes to ignore warning signs and forget to take care of yourself, but it’s not wise.”

“Because of how quickly life moves, it is easy sometimes to ignore warning signs and forget to take care of yourself, but it’s not wise.”
~Cheryl Bradford
Read Cheryl’s story (& 59 others) in Kaleidoscope: #RareDisease Stories
a.co/d/0e1Zcsar
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#SarcoidosisAwarenessMonth #sarcoidosis #SarcoidStories

FLaB/SAM background with text Life & Breath Foundation Sarcoidosis Support Group The Life & Breath Foundation’s mission for this support group is to provide support, empowerment, and hope to individuals and families affected by sarcoidosis. Through a compassionate and understanding community, we strive to create a safe space where members can share their experiences, find valuable resources, and gain knowledge about this complex condition. Thursday, April 9, 2026 8:00 - 9:00 pm ET Register to attend at lifeandbreath.org

Life & Breath Foundation
#Sarcoidosis #SupportGroup

Thursday, April 9, 2026 | 8:00 - 9:00 pm ET

L&B’s mission is to provide #support, empowerment, and #hope to individuals and families affected by sarcoidosis.
Register at lifeandbreath.org
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#SarcoidosisAwarenessMonth #RareDisease #SpoonieSky

When the New Pulmonologist Asked About a Lung Transplant, I Already Knew My Answer After insurance forced me to leave the pulmonologist who had known my lungs for twenty years, a brand-new doctor asked a question that hit me like a dropped skillet: had anyone discussed putting me on the transplant list? If you live long enough with sarcoidosis and serious lung disease, transpla...

Insurance made me leave the pulmonologist who knew my lungs for 20 years. Then a new doctor asked if anyone had discussed a transplant. Hearing it and wanting it are not the same. New episode: www.buzzsprout.com/2... #Sarcoidosis #ChronicIllness

So I have been shut down by Meta on Insta, Threads and Facebook for not following community guidelines. My crime? Posting about chronic illness and links to my podcast. Weirdos
#chronicillness #sarcoidosis

FLaB/SAM background with AnCan logo and text that reads: Sarcoidosis Support Group Virtual support group for patients and caregivers affected by sarcoidosis. Join via online link (GoTo Meeting) or by phone (international call-in numbers available). Wednesday, April 8, 2026 7:00 - 8:00 pm ET AnCan’s vision is to provide easily accessible, inclusive virtual peer support for every serious disease and condition allowing widespread participation, especially to those geographically, physically or socially disadvantaged. AnCan.org/sarcoidosis

@ancan501c3.bsky.social #Sarcoidosis #SupportGroup
Virtual support group for patients and caregivers affected by sarcoidosis. Join online or by phone.

Wednesday, April 8, 2026 | 7:00 - 8:00 pm ET
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ancan.org/sarcoidosis
#SarcoidosisAwarenessMonth #support #RareDisease #SpoonieSky

For reference, here's our work on CMR phenotyping:

pubmed.ncbi.nlm.nih.gov/40400457/
pubmed.ncbi.nlm.nih.gov/36103165/
pubmed.ncbi.nlm.nih.gov/31954639/
pubmed.ncbi.nlm.nih.gov/31070111/

#WhyCMR #sarcoidosis #cardiacsarcoidosis #CardioSky

This study confirms, for the first time in a fully prospective cohort, the prognostic importance of CMR phenotyping in cardiac sarcoidosis. The high-risk CMR phenotype had 100% NPV, indicating the absence of VA events among patients without the high-risk phenotype. LGE phenotyping showed much higher interobserver reproducibility than LGE quantification and was five-fold faster.

In science, successful replication is the ultimate quality check!

This is a highlight for our research group—David Birnie's group (one of the biggest names in cardiac sarcoidosis) just independently replicated our CMR phenotyping work!

doi.org/10.1093/ehji...
#EHJIMP #CardioSky #sarcoidosis

Kaleidoscope background with SAM ribbon and photo book open to "From Unknown to Incurable" by Fabian Bacchus

Kaleidoscope/SAM background with quote from Fabian Bacchus: "At the age of 24, and not to mention a first-time father, being told I have a disease that's not curable wasn't what I expected."

"At the age of 24, and not to mention a first-time father, being told I have a disease that's not curable wasn't what I expected."
~Fabian Bacchus

Read Fabian’s story — and 59 others — in Kaleidoscope: #RareDisease Stories
a.co/d/0e1Zcsar
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#SarcoidosisAwarenessMonth #SarcoidStories #sarcoidosis

In others yet, #sarcoidosis can be a #chronic and ongoing problem. The chronic form of the disease is the most serious and the most likely to damage organs and become resistant to treatment.

I'm in that last category, so I'm doing all I can to help raise awareness and support my #sarc community.
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Because it can affect any organ, or multiple organs at the same time, #sarcoidosis takes on different forms. In some people, the condition manifests itself as a one-time episode, with #inflammation resolving by itself, while in others, it may come and go episodically.

FLaB Sarcoidosis Awareness Month background with purple ribbon and text that reads: What is Sarcoidosis? Sarcoidosis is a disease marked by an overactive immune system that leads to the formation of small clumps of inflammatory cells called granulomas in different tissues and organs, affecting how well they work. Over time, granulomas can become calcified or bone-like and cause permanent damage. Because it can affect any organ, or multiple organs at the same time, sarcoidosis takes on different forms. In some people, the condition manifests itself as a one-time episode, with inflammation resolving by itself while in others, it may come and go episodically. In others yet, sarcoidosis can be a chronic and ongoing problem. The chronic form of the disease is the most serious and the most likely to damage organs and become resistant to treatment.

#Sarcoidosis is a disease marked by an overactive immune system that forms small clumps of inflammatory cells (granulomas) in various tissues and organs, affecting how well they work. Over time, they can become calcified and cause permanent damage.
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#SarcoidosisAwarenessMonth #awareness #SpoonieSky

The Strange Math of Chronic Illness: What Sarcoidosis Taught Me About Expectations People sometimes ask how anyone living with sarcoidosis can stay positive day after day. The answer isn’t motivation, inspiration, or some magical personality trait. It’s something quieter… something most people miss entirely.

People ask how someone with sarcoidosis stays positive day after day. It isn’t motivation, inspiration, or some magical personality trait. It’s something quieter, and most people miss it. #sarcoidosis #chronicillness

Using our role as ‘professional patients’ to learn and pay it forward Columnist Kerry Wong considers herself a "professional patient," which means she has much to offer others this Sarcoidosis Awareness Month.

Knowledge is power. That’s especially true when it comes to chronic illness, especially w/ a rare disease like #sarcoidosis, as I share in this week’s Sarcoidosis News column.
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sarcoidosisnews.com/columns/usin...
#SarcoidosisAwarenessMonth #PatientEducation
#ChronicIllness #RareDisease #SpoonieSky

Raised By Women, Tempered In Kitchens:How Respect Became My Quiet Rebellion (and Why I’m Done Laughing Along) I learned respect the slow way—by watching what happened when women spoke and men decided they were “too much.” By listening in kitchens where the food mattered more than the people making it. And by living long enough with sarcoidosis and heart failure to realize time is expensive, energy is lim...

Respect taught me the slow way: watching women dismissed, working in kitchens where food mattered more than people, and living with sarcoidosis long enough to know silence can sound like agreement. #chronicillness #sarcoidosis

A night of nostalgia proves compassion counts with chronic illness Witnessing acceptance and inclusion onstage at a multi-act concert was proof that compassion counts, writes columnist Kerry Wong.

The New Edition Way Tour was beyond anything I'd anticipated ... but for so much more than just the music! In this week's Sarcoidosis News column, I share what made it so emotional for me.
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sarcoidosisnews.com/columns/nigh...
#ChronicIllness #disability #PatientExperience #sarcoidosis #SpoonieSky