I spent the first hours of April poring through television news in the U.S. Not a single mention of Sarcoidosis Awareness Month for my efforts. I did see a bus advertising it roll by in the background of a live broadcast in Philadelphia. I smiled because that’s life with a rare disease. We don’t get headlines, but we are here behind the scenes.
A lot has been going on outside the mainstream media’s focus these past few months. Splashy coverage has been absent, but it’s good news for our community.
In March, the U.S. Food and Drug Administration approved the use of Boehringer Ingelheim’s Ofev (nintedanib) to treat sarcoidosis and other interstitial lung diseases. After numerous grueling prednisone courses, I welcome new options.
April also brought encouraging news. The American Thoracic Society published its first clinical practice guidelines to detect and diagnosis sarcoidosis. And the National Heart, Lung, and Blood Institute of the National Institutes of Health awarded a $1.98 million grant to Wayne State University researchers to advance efforts to develop diagnostic tests.
Hopefully, those actions will substantially improve diagnosis of sarcoidosis, which can be difficult because some people don’t have symptoms in the early stages, and symptoms can mimic other disorders.
Battling the pandemic
The pandemic is frightening for many in our community because sarcoidosis affects the lungs and lymph nodes in more than 90% of us. The American Lung Association is battling back with a $25 million initiative aimed at ending COVID-19 and defending against future respiratory threats.
The Foundation for Sarcoidosis Research (FSR) and the University of Cincinnati teamed up to gauge the impact of COVID-19 in the sarcoidosis community through a survey. Preliminary results indicate we may not be at greater risk of COVID-19 infection or experience worse outcomes. More research is needed, however, so be sure to participate in the survey on FSR’s website.
The Rare Diseases Clinical Research Network introduced an online survey in May to understand the pandemic’s impact among those with rare diseases, along with their families and caregivers.
Financial aid and resources
There is also help for those with rare diseases in the U.S. who are struggling financially because of the pandemic. Applicants can receive up to $1,000 annually for essential expenses under the COVID-19 Critical Relief Program rolled out in April by the National Organization for Rare Disorders. Utilities, rent, and mortgage payments, and emergency repairs for cars, homes, or major appliances are among the allowable expenses.
FFF Enterprises and BioNews Services has formed a partnership as well to provide resources to patients.
More sarcoidosis voices are emerging. The “Sarc Fighter Podcast“ launched earlier this year through the efforts of FSR and news anchor John Carlin, who works for WSLS 10 in Roanoke, Virginia.
Sarcoidosis-related coughs are common for many of us. SarcoidosisUK created buttons to raise awareness and keep us safe amid pandemic fears . The buttons state: “My cough is not contagious. It’s sarcoidosis not coronavirus.” Their popularity led to other creations, including, “I have an underlying condition. Please be extra careful around me,” and, “My cough is not contagious. I have a lung condition.”
Our lives may be on hold for the foreseeable future, but efforts for our community haven’t ceased.
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.
- Free credit reports: Remember the days of only three free credit reports per year? They’re gone. In response to COVID-19, Equifax, Experian, and TransUnion are now offering free weekly online credit reports in the U.S. through April 2021. To get yours, go to AnnualCreditReport.com.
- Get paid to save energy: OhmConnect is offering cash as an incentive to get Californians to conserve energy during peak times. Participants are sent a weekly text or email challenging them to use less electricity for one hour. If they beat expectations, they get paid. For more information, go to www.ohmconnect.com.
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 Services, and are intended to spark discussion about issues pertaining to sarcoidosis.