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 shake it. 

I thought I’d be an early candidate for protection against COVID-19 because of my sarcoidosis and asthma. But I’ll be among the last eligible in Pennsylvania, which as of this writing ranked a pitiful 46th among states for its rollout of received vaccine doses. 

That feels like an awfully long gamble with interstitial lung disease. Especially with more contagious variants now circulating, and areas easing restrictions to pump up economies. 

It’s a hard wait, considering the sentiment is shifting from “We’re all in this together” to “Stay inside if you’re worried” each day the pandemic drags on. 

But we don’t have to go it alone. There are several upcoming events that provide opportunities to learn, advocate, and connect with others who have this rare disease. 

Gain some knowledge

I decided in January to be vaccinated when the opportunity arrived. If you are still undecided, the charity SarcoidosisUK will hold a vaccine Q&A with a physician today, March 9. You can watch the video later if you miss the livestream. More information here.

On March 11, the fitness and wellness program BreatheFit will hold a webinar on breathing exercises for sarcoidosis patients. Register here. 

I’ve mentioned the challenges of getting care in the past. The Sarc Social “Creating an Effective Office Visit” on March 13 will help participants get the most out of time spent with physicians. It’s part of a new virtual networking event that the Foundation for Sarcoidosis Research started this year. Sign up here.

On April 1, the Royal Brompton Hospital and SarcoidosisUK will host the free virtual event Sarcoidosis Patient Day. Stay tuned for updates.

Finding others

If you are looking to connect with others for support, Stronger Than Sarcoidosis holds a bimonthly national online support group. The next is on March 18. The organization also hosts a #SarcTalk monthly Twitter chat. The next is on March 24. Find more details here. 

Temple Health in Philadelphia also provides a virtual sarcoidosis support group. Its next meeting is April 19, from 2-3 p.m. Learn more here.

Become a voice

If advocacy is something you are interested in, check out RARE on the Road 2021. This is an effort by two nonprofits to groom the next generation of voices for rare diseases. On March 23, they will host “A Rare Disease Leadership Interactive Webinar.” Three virtual training and networking events are also planned for May for Nevada, Florida, and Illinois residents.

Another way to help our community is by participating in SarcoidosisUK’s coronavirus survey. The aim is to understand the pandemic’s impact on those with sarcoidosis. Here is the link.

This is hardly a comprehensive list, but rather a snapshot. If you’d like to share other events, please leave a comment below. 

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Brighter side: We all could use a break from bad news right now. So, I’ll be closing my columns with a roundup of positivity until we are able to say goodbye to masks, hug our loved ones, and leave our homes without fear.

• Become tech-savvy: Flower Memorial Library in Watertown, New York, now offers free online courses to familiarize older adults with technology, WWNY-TV reported. The classes are held every Thursday via Zoom. If you need help using the platform, there’s a video tutorial here. Cloud storage, video chat, and person-to-person electronic payments will be covered this month. 
• Favorite pizza shops: Pizza is popular across the U.S. Thrillist reveals which chains and local shops led Google searches in each state last year. Pizza Hut and Domino’s dominate the map. View the full results here.

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Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sarcoidosis.