Let’s Show the Many Faces of Sarcoidosis This Awareness Month

Athena Merritt avatar

by Athena Merritt |

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I stumbled upon sarcoidosis in 2002, and still wake each morning wondering what’s in store. It doesn’t follow a set path when it invades our bodies, making it just as baffling today as when I was first diagnosed.

If I had named this disease, I would have called it “everything but the kitchen sink disease” because it can strike anywhere and cause every symptom imaginable. With only 150,000-200,000 people in the U.S. and 1.2 million people worldwide estimated to have sarcoidosis, it’s understandably difficult to diagnosis and treat.    

To change that, we must keep flooding healthcare providers, news outlets, and social media accounts with our stories. They need to see the many lives being affected by this rare illness with no cure. 

Without more research, our mysteries will remain unsolved. We can help by not only sharing our experiences with the medical community, but also with one another. 

Whether you’re a low-key type or like to be front and center in these efforts, National Sarcoidosis Awareness Month, which kicks off Thursday, offers plenty.

Opening day activities

You can jump right in with Sarcoidosis Patient Day on April 1, which is a first for SarcoidosisUK and the Royal Brompton Hospital. Leading specialists have been lined up for the free virtual event being held from 10 a.m.-4 p.m. British Summer Time, or 5-11 a.m. EDT. You can claim your ticket here. 

After sitting through that event, you may want to stretch your legs, because fundraising walk challenges are taking place on both sides of the pond. 

SarcoidosisUK’s Warrior Walk involves 100 miles in 30 days. If you start right away, it will take about 3.3 miles (or around 7,000 steps) daily to complete. The Foundation for Sarcoidosis Research (FSR) hopes warriors will walk “9 MILLION steps collectively or complete the equivalent of 4,500 miles” to help raise $25,000 for its research and patient programs in the U.S. Its Steps for Sarc Virtual Endurance Challenge is also a monthlong event.

Hiding in plain sight

For some like myself, there are no outward signs of our health issues. The cluster of inflammatory cells from sarcoidosis, called granulomas, occur most often in the lungs and lymph nodes, but they also can affect the eyes, skin, heart, or any other organ. There is a long list of other symptoms, such as fatigue, pain, and cognitive issues, that we also battle unseen. 

Every year, the nonprofit advocacy organization Caring Hands Sarcoidosis Foundation showcases our community through its Beautiful Faces of Sarcoidosis campaign. To participate, email your picture and the information you want to share about yourself to [email protected]

SarcoidosisUK is also seeking submissions for its Warrior Photo Wall, which requires a minimum donation of 2 pounds, or about $2.75.  

We can also wear apparel and other items to raise attention and support our cause. FSR and SarcoidosisUK have stores on their websites.

Numerous other activities also are scheduled, including a U.K. virtual bake-off. Check out the FSR’s full list of events here and SarcoidosisUK’s events here. 

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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.

  • Shot for doughnuts: Who can resist a Krispy Kreme original glazed doughnut? You can get one free every day for the rest of the year by showing your COVID-19 vaccination card as part of a new promo running in the U.S. However, not everyone is happy about the offer, including some healthcare professionals who have prompted an interesting online discussion about the importance of a healthy diet.

Krispy Kreme is offering a sweet new reward for showing your COVID-19 vaccination record card. (Courtesy of Krispy Kreme Doughnut Corporation)

  • Sprint to savings: Lingoda, an online language school, is offering to refund the entire cost of a course, up to $1,300, CNET reports. But there’s a catch: You have to attend a one-hour class every day for 90 days. The less ambitious can get 50% cash back by attending 15 classes per month for three months. You have a pick of French, Spanish, German, and English, and must sign up by April 16. Space is limited for the courses, which begin April 28. 

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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.

Comments

stephen fiege avatar

stephen fiege

Hi Athena, I have a new one for you about this disease. Last December 2020 my back left wisdom tooth on my lower jaw no less cracked. I now have to go have it removed. It took 2 months to get in to have it removed. 10 days before I go my sarc flares because of it. First my teeth upper and lower jaw become off the chart in pain then my lips swell up and blister and bleed. Then it moves into my sinuses and chest with the swelling. My blood pressure goes to 182/122. The doctor almost wouldn't pull the tooth due to high blood pressure. But he did. I get the tooth pulled and go on flonase and steroids with pain killers. That brings down the swelling in a month. Too bad with a bad heart the flonase causes my heart to go crazy and my ICD goes off and almost kills me. All from a single tooth when you have a very bad case of Sarc. It wasn't even infected so says the doctor and wonders how all this can happen from just a tooth..So now 4 months later I am getting back to my base level. This was worse than when I got bit bad by a dog in a third world walking the beach. That went crazy too in just a half hour. That is life living with a very rare case of Sarc..

Reply
Athena Merritt avatar

Athena Merritt

Wow, what a terrible thing to go through! I’m happy to hear you are rebounding, Stephen. Sarc is certainly an adventure. There are some crazy connections between our teeth and health. Nothing seems to be off limits when it comes to this disease. I hope the days ahead are peaceful. Hang in there, and stay safe!

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