| STR❄NGER THAN SARC❄ID❄SIS | Happy March!
Where does the time go? It's almost SPRING, and especially this year, that's bringing light (Daylight Saving Time is this weekend!) and hope along with the warmer weather. Between the COVID-19 vaccine and Sarcoidosis Awareness Month next month, we've got a lot to look forward to!
In the meantime, we're bringing you patient perspectives, important information, amazing activities, and outstanding opportunities (and some pretty awesome alliteration there, too ��). Read on, and we're sure you'll find something that piques your interest!
Stronger together,
~Frank, Kerry, Cathleen, & Cheryl | | | |
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Upcoming Events: | | Check our Upcoming Events page often to find events that may be of interest to the sarcoidosis community - that includes not only our own offerings, but captivating webinars, conferences, and activities from other organizations that we think you'll enjoy. While we're all virtual for everyone's safety now, we look forward to seeing you online, and in person when it's safe!
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National Sarcoidosis Online Support Group | |
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#SarcTalk
Monthly Sarcoidosis Chat on Twitter | |
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until Sarcoidosis Awareness Month!
Stay tuned for Sarcoidosis Awareness Month activities and events coming next month - we'll have lots of great opportunities to raise awareness, connect with & support one another, and raise funds to support our Stronger Than Sarcoidosis endeavors. |
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| MAR 11, 2021 | From COVID-19 to the Vaccine | Last year, Cheryl and her family were touched by COVID-19. As the physical and emotional effects linger, she had to keep it all in mind when considering whether to get the vaccine when she became eligible. Here, Cheryl shares her experience and her thoughts. | | |
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Around the Web: | | In Their Own Words | | We often refer to sarcoidosis as a snowflake disease, because every one of us has a unique experience. From which organs are involved to the severity or remission, no two of us are alike. Still, there are common threads that make the experience relatable, that bring the snowflakes together. We'll always share our own experience with you, and we'd love to hear about yours. We're sure you'll find something relatable in the stories shared by the warriors below. |
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Remission Doesn't Always Mean the End of Symptoms (Sarcoidosis News)Athena, a former journalist and Pennsylvania native, was diagnosed with sarcoidosis in 2002. She’s admittedly addicted to books, Marvel, and football. She tackles life with humor, passion and curiosity, and hopes to reach others through her writing. |
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You Don't Have to Be Strong, You Just Have to Be a Little Stronger (A Chronic Voice)
My name is Sheryl, and I look like your average human being. You’d probably not give a second glance should our paths cross on the street. But my body is in a bit of a mess. I have had a mini stroke at 14, multiple blood clots in the lungs and legs, a faulty heart rhythm, a gore-tex band for a heart valve, seizures, scars all over my body from various surgeries, and have never had a break from Lupus in over a decade, just to name a few. By sharing my experiences here, I hope to reach out to those who are suffering to let them know that it is okay to feel depressed, sad or frustrated. Let us simply get through it together one day at a time, and if need be, one second at a time - I can, I can, I can. That’s 3 seconds down. |
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The First Time I Laughed at My Chronic Pain (The Mighty)
My name is Jessica. I’m a nurse. For as long as I can remember I’ve been passionate about helping others. I’ve always tried to understand put myself in my patients shoes, but I always knew I could never truly understand what they were going through. Other being a nurse I am also a frequent patient. I have epilepsy, anxiety, a rare compression syndrome called nutcracker syndrome, pelvic congestion syndrome, and pelvic floor dysfunction. I also have chronic pain that has yet to be diagnosed. While dealing with all these chronic illnesses is hard at times, it has made me a much better nurse and I am grateful for that. |
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| | Rare Disease Day at NIH | Virtual Conference ❄ March 1 | Rare Disease Day at NIH was held virtually on Monday, March 1, 2021, from 10:30 a.m. to 5:30 p.m. EST. The event featured interactive panel discussions, rare stories through TED-style talks and more. The event was free and open to the public, including patients, patient advocates, health care providers, researchers, trainees, students, industry representatives and government employees. | |
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| | FDA's Rare Disease Day 2021 | Virtual Public Meeting ❄ March 5 | The purpose of this meeting is to highlight strategies to support rare disease product development. Patients, patient advocates, researchers, and medical product developers may benefit from attending this public meeting. During presentations and panel discussions various stakeholders will share their perspectives on and experiences in rare disease product development. | |
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Patient Driven Project for Patient Benefit NEEDS YOUR HELP! | The output of this project will be several publications to improve and guide sarcoidosis care from healthcare professionals and healthcare institutions.
BACK STORY: Sarcoidosis patients and clinical experts invested hundreds of hours to research and understand patients' experience before and after COVID-19. The results of Phase I will be published imminently, so we need you NOW to help complete Phase II. Once Phase I is published, we cannot collect any more responses due to possible bias after reading the journal article. |
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Read All About It ... Or Listen! | Walking in Silent Pain and I Have Sarcoidosis but it Doesn't Have Me, Frank's autobiographical works about his life with sarcoidosis (and so much more), are now available on Audible, in addition to Kindle and paperback versions. Proceeds donated to Stronger Than Sarcoidosis. |
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PC Party for a Purpose | Starting the end of this month and leading into Sarcoidosis Awareness Month (March 28th ~ April 4th), we'll be hosting a Pampered Chef fundraiser: 20% of your purchase will be donated to Stronger Than Sarcoidosis. |
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Coming Soon: STS Merch! | On April 1st, as we begin Sarcoidosis Awareness Month, we'll be launching the STS store, so you'll be able to show the world you're Stronger Than Sarcoidosis while helping us to support and empower the sarcoidosis community. |
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Continuing the Conversation | |
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| "You alone are enough.
You have nothing to prove to anybody." | |
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