Sarcoidosis: A Snowflake Disease With an Avalanche of Consequences
A foot fracture, sarcoidosis symptoms, and COVID-19 overwhelm this columnist
When it rains, it pours … but when it snows, it’s sarcoidosis.
Sarcoidosis is often referred to as a snowflake disease because no two cases are exactly alike. Symptoms can begin at any age and affect any area of the body. It is often a chronic condition, but some sarcoidosis warriors are able to achieve remission.
It affects each of us at varying levels of severity, from day to day or even hour to hour. Some people are asymptomatic and unaware that they have sarcoidosis, while others, like me, become disabled. Sadly, complications from sarcoidosis can be fatal, as was the case with my fellow patient, advocate, friend, and inspiration, Rodney Reese, who passed away in September 2021.
Unfortunately, sarcoidosis can have a snowball effect, looming ever larger in both the body and the mind.
The dance of treatment, side effects, and comorbidity
It starts with a symptom or two, and during the search for answers — which can last years — frustration and fear pile on. With the grief and relief of diagnosis, we may begin treatment, but that often brings distressing side effects.
Because of this inflammatory disease and its treatments, many of us become immunocompromised, leaving us at greater risk for infections, viruses, and more. Sarcoidosis is often joined by comorbid conditions, which lead us back through the cycle with new symptoms, treatments, and side effects.
As we build our stockpile of treatments, it can feel like we’re in a snowball fight with our bodies, volleying back and forth between taking hits and throwing everything we can at our symptoms and their underlying cause.
Sarcoidosis took its first shot at me over a decade ago, and I have since hit back with steroids, anti-malarial drugs like hydroxychloroquine, and low-dose chemotherapy drugs like methotrexate. I was recently struck with a surprise snowball when I fell and broke my foot while on vacation.
As if the fracture weren’t enough, I had to miss my weekly intravenous immunoglobulin (IVIG) infusions, because my neurologist was concerned about the increased risk of thromboembolic events (blood clots). Going a month without my infusions, I felt a noticeable increase in neuropathy symptoms.
Another setback
I was able to get back in the fight when my primary doctor prescribed a blood thinner to counter the risk of blood clots. But after one infusion, I learned that my mom had tested positive for COVID-19, just two days after we were together for Hanukkah. I had to isolate for 10 days, which meant missing my infusions again, which led to more neuropathic pain — in addition to my still broken foot.
Before I could even get up, the hits just kept on coming: My husband tested positive for COVID-19, too, and although we tried to keep our distance after that, it was too late. After avoiding most people and places for nearly three years, I was sick with COVID-19. Now I had a broken foot, increased nerve pain, and COVID-19, all at once.
It was very strange to have COVID-19 along with sarcoidosis. Many of the symptoms overlap, so at times I wasn’t sure if it was COVID-19 or just a bad sarcoidosis flare. On a good day, I can easily become short of breath, and I’ve had a stuffy nose due to chronic sinusitis and rhinitis for over 15 years. I’ve had a scary-sounding cough since I was a child, and I live with fatigue, sweats, chills, and a variety of aches and pains throughout my body, all the time. But when I felt the cough reverberate through my chest, I just knew.
I was somewhat prepared for this battle, though. I was fully vaccinated and boosted, and had a few at-home tests in my closet. Together with the antiviral treatment Paxlovid that my doctor ordered right away, I was able to melt these newest snowballs thrown at me.
I am so grateful for these scientific advances, as I know that the virus would have been much worse without them. After about a week and a half, my COVID-19 symptoms finally eased, and I am excited to say that I am finally back at the infusion center as I type this.
But just as mounds of snow can remain long after it has stopped falling, COVID-19 symptoms can linger after a negative test.
As I continue working my way through messy piles of snow, I’m still struggling with a broken foot. And I still have sarcoidosis fatigue. And autonomic nervous system dysfunction. And severe arthritis. And … the list goes on. With all those ands, it’s hard for me to say that I feel “better,” but I’m grateful to say that it’s not as bad as it was.
Just like snowflakes, each sarcoidosis warrior is unique and beautiful in their own way. And though we may be fragile on our own, when we join together for support, education, and advocacy, we can be a powerful force.
“Even the strongest blizzards start with a single snowflake.” — Sara Raasch
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.
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Comments
BRYCE
Thank you for sharing. Reading about what it feels like to have Sarcoidosis helps me to understand, to some degree, what my best friend is going through. Has your foot healed completely, or does it still give you trouble?
Thanks again,
🦋 Kerry Wong
On behalf of your friend, Bryce, I'll say thank you. It means so much when the people around us care enough to learn more.
My foot is doing ok. It's still in the air cast, and I'll be seeing the orthopedist for an x-ray & follow-up this week. Thank you for asking.
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alan cameron md
well said and described. I am an experienced physician--- 50 years in FP and Geriatrics. I remember being told "good news! Its Sarcoidosis! This was after many years of high dose steroids and being on the waiting list for a lung transplant- gaining over 160# and becoming diabetic. The good news was that I had a sort of rare autoimmune disease with no known cause, cure, or effective treatment (other than steroids). I was told that it was perhaps more common in young black women and sometimes goes away on its own. I am not a young black woman, and it has NOT gone away. My providers make snap decisions based on limited information. I share your frustrations! Some of the expensive treatment MAY be working, but my best advice is to find one of the few centers that have expertise in Sarcoid- and a provider who will listen to you. There is some solace in trying something even if it isn't as effective as you want. Get your vaccinations, and avoid exposure as you can- and try the paxlovid if you test positive. get the shingles shot too!
best wishes- nice note, abc
🦋 Kerry Wong
Alan, I feel you so much on all of this! So many people I know were told that sarcoidosis was good news, because "at least it's not cancer." I've definitely been through a lot of the wrong doctors before finding the right ones (and that included a couple of great ones at the Cleveland Clinic). I hope you've been able to find doctors who give you the high level of treatment that I'm sure you give to your own patients.
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Lori
This is great information as are the comments., Does anyone have a good doctor specializing in musculoskeletal and the horrid inability to stabilize body temperature?
thank you
🦋 Kerry Wong
Thanks. I know those can be especially difficult to deal with. You can find some great sarcoidosis centers through the World Association of Sarcoidosis and Other Granulomatous Diseases (WASOG) at https://www.wasog.org/about/wasog-sarcoidosis-clinics.html. Good luck!
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Mary Lou Desjardins
I was having trouble with shortness of breath and fatigue.
Then huge purple hives appeared all over my body. I had a childhood scar on my forehead and it grew like a unicorn. In the ER doctors gave me a steroid that improved my breathing for a few hours but no diagnosis. My whole body hurt, legs, arms, feet, hands, and shortness of breath. It was diagnosed immediately by a doctor in the ER of a teaching hospital in London, Ontario. With his students trailing behind he informed me that I had an inflamed node in my lung and that the diagnosis was sarcoidosis. He was surprised when I told him that my daughter had it. How often does this occur in a family? He gave me a dose of steroids and I felt better immediately. I rested at home for a whole summer with severe fatigue. No steroids. All the symptoms disappeared. I have a scar on my lung. My housekeeping and gardening are neglected. My fatigue compounds my depression. Eighteen years later I ended up in the ER. Blood clots in my lungs, fluid around my heart, and pneumonia. That night was the only time I felt the pain. Now I have a cardiologist, two respirologists, a dermatologist (psoriasis), and my family doctor. Everyone but my doctor disagrees that it is sarcoidosis. But I know I am much better off than others who are tortured and have died. This is my snowflake.
🦋 Kerry Wong
Wow, Mary Lou - thank you for sharing your story. I'm sorry it's been so difficult for you, and having it in the family, well, it's good to have someone else who understands (and someone you can learn from), we also wish no one else we care about had to suffer like this. From what I understand, it's not hereditary per se, but there is a higher risk of getting it if someone else in your family has it (http://sarcoidosisnews.com/news/sarcoidosis-risk-higher-families-with-disease-history-swedish-study/).
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Scott Davis
I am glad I found this column. Thank you for your bravery and advocacy. I discovered I had sarcoidosis when I had bilateral uveitis in my 20s. I never really followed with a rheumatologist after that and in 2019 discovered that I had cirrhosis from hepatic sarcoid. I received a liver transplant 6 weeks ago and am doing much better. I hope that the anti-rejection meds actually treat my sarcoidosis.
🦋 Kerry Wong
Wow, I'm sorry you had to go through all that, but thank you for sharing here, Scott. I'm so glad you were able to get the transplant and already doing so much better. Sending positive vibes & hope that you just continue improving!
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Deidre Zanker
Sarcoidosis is inherited through a gene fault & activated by contact with Micobacterium avium sub type paratuberculosis. ( MAP)
🦋 Kerry Wong
There's still so much not known regarding the causes. It is generally understood to be some combination of genetic and environmental factors, but it's still unclear. See more info about what causes sarcoidosis at https://sarcoidosisnews.com/sarcoidosis-causes/
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Keith brradley
hey hope you are well. I am reaching out because more people should know about this monster called sarcoildsis. I took was sick with sarcoild but I was battling heart failure to had them under control but COVID 19 stop that.got treated for COVID ,but that awaking the monster again. with heart failure stag 3 and COVID ,once the monster COVID got stopped sarcoild raged I was treated by the Dr at UAB ,in and out of hospital for months. scared my wife to death. last stay in the hospital was from Oct to Dec.but my left ejection fraction got down to 10. they put me on the transplant list. all because of COVID. so people with this monster try hard to keep it in a cage. still alive and kicking. thank you god