Float Like a Buttahfly: Sarcoidosis

Sarcoidosis ❄ Advocacy ❄ Resource ❄ Connection
(SARC)

#SarcStrong

What may have started with Lance Armstrong's LIVESTRONG bracelets, the "strong" hashtag has been used for all different communities that have been dealt an awful blow. Like #BostonStrong after the marathon bombing, #ParklandStrong after the school shooting, and #LiveStrong for the cancer community, #SarcStrong embodies the strength and resilience of those living with the rare disease sarcoidosis. Use this hashtag to show strength when you're feeling it, or to manifest it when you're needing it. We are Sarcoidosis Warriors. We are #SarcStrong.

What is Sarcoidosis?

"Sarcoidosis (pronounced SAR-COY-DOE-SIS) is an inflammatory disease characterized by the formation of granulomas—tiny clumps of inflammatory cells—in one or more organs of the body. When the immune system goes into overdrive and too many of these clumps form, they can interfere with an organ’s structure and function. When left unchecked, chronic inflammation can lead to fibrosis, which is the permanent scarring of organ tissue. This disorder affects the lungs in approximately 90% of cases, but it can affect almost any organ in the body. Despite increasing advances in research, sarcoidosis remains difficult to diagnose with limited treatment options and no known cure."

- More info from Foundation for Sarcoidosis Research

Advocacy

As sarcoidosis patients, we need to advocate for ourselves in a variety of situations: at home, at work, and even (especially) at our medical appointments.

(More info about advocating for ourselves coming soon)

As a community, we can make a bigger impact when we join together and make our voices louder. For sarcoidosis warriors like us, that often means working together with the rare disease community.

NORD’s Rare Action Network™ mobilizes grassroots supporters across the country to advocate for policies that benefit patients with rare diseases. The network operates primarily at the state level to complement NORD’s already robust Federal policy work.
Rare Disease Legislative Advocates (RDLA) is a program of the EveryLife Foundation for Rare Diseases designed to support the advocacy of all rare disease patients and organizations. RDLA believes that every voice matters and that patients are the key to changing public policy.

Resources

Sarcoidosis News is the web's leading resource for news, information, and daily updates for Sarcoidosis patients and caregivers.
The Foundation for Sarcoidosis Research is the nation’s leading nonprofit organization dedicated to finding a cure for this disease and to improving care for sarcoidosis patients.
Within Cleveland Clinic's Respiratory Institute, the Sarcoidosis Center serves as a single point of access for patients to receive the best care for their condition.
The Once Upon a Time: Sarcoidosis for Beginners page on Facebook offers introductory information for those who are newly diagnosed with sarcoidosis.
The World Association for Sarcoidosis and Other Granulomatous Diseases (WASOG) brings together clinicians and scientists dedicated to ILD [Interstitial Lung Disease] from all over the globe.

Connection

Monthly #SarcChat Twitter Chats give sarcoidosis warriors a chance to connect & support one another in this sarc life we're living.
The Sarcoidosis for Beginners group on Facebook aims to remove some of the fear for those who are newly diagnosed by offering information and support. It is a place where we can share words of encouragement to the newbies, provide information on how to advocate for their own health, and how to build a supportive network for themselves.
AnCan was the first to innovate virtual, real-time, video chat support groups in multiple conditions moderated by patients for patients. With its Sarcoidosis Virtual Chat Support Group, you will be able to do a video chat with others who are affected by sarcoidosis and their caregivers.
The Stop Sarcoidosis Support Community Inspire connects patients, families, friends, and caregivers for support and inspiration.
The Foundation for Sarcoidosis Research's new Chronic Sarcoidosis Support Group kicks off with a six-month schedule beginning this month. Each month, we will host two groups and participants can choose to participate in ONE of the two sessions offered.
The weekly iHart Wellness Chronic Illness Support Group is an opportunity to come together in an online community to explore ways to not just survive a chronic illness, but to thrive. Participation is free, but enrollment is required.