‘It’s Hard to Be What You Can’t See’
For those with sarcoidosis, one of the most challenging aspects of the disease is finding folks who are just like us.
I’m not referring to race, gender, or any other characteristic that differentiates us as individuals. I’m talking about the things that make us the same. I’m talking about finding people who also struggle with the disease.
Of course, part of that is simply the rare nature of sarcoidosis. It’s hard to “see” others when there aren’t many of us out there. According to the Foundation for Sarcoidosis Research (FSR), between 150,000 and 200,000 people live with the disease in the U.S. Given the U.S. Census Bureau‘s July 2019 population estimate of about 328 million, roughly one in 2,000 Americans has sarcoidosis. Thankfully, organizations like FSR, as well as hospitals and clinics devoted to the disease, give us an opportunity to meet others like us.
Marian Wright Edelman, founder and president emerita of the Children’s Defense Fund, said, “It’s hard to be what you can’t see.” Many of my colleagues and mentors have shared this wisdom with me over the years.
Even if we do happen to meet other sarcoidosis patients, the darn disease affects each of us differently. I’m admittedly not a huge fan of calling sarcoidosis patients like myself “snowflakes,” but I understand the point of the term. Just as each snowflake is unique, each sarcoidosis patient is affected uniquely by the disease. Perhaps two people both have lung involvement, but while one might require an oxygen tank to survive, the other is able to continue without it. We’re similar, yet so very different.
Beyond our uniqueness as sarcoidosis patients, sometimes my own body feels different every year (or even every day). My sarcoidosis presented far differently when I was diagnosed in 2014 than it does today. No doubt, some of that is due to better medicine, improved healthcare, and more knowledge of how the disease affects my body. But sometimes, even after all these years, I still struggle to understand this condition. Some days, I don’t know how I truly feel until I take a breath and walk a few steps away from my bed.
It was quite some time before I was even able to talk with others about sarcoidosis. For a long time, I didn’t even like using the word “disease.” I still don’t really like it, but I’ve realized that using the word freely helps remove some of its stigma and power over me. In recent years, I’ve also learned the power of honestly telling others how I’m doing.
My friends’ encouragement pushed me to be more open about my condition on social media. These days, if you view my Instagram, Facebook, and LinkedIn accounts, you are bound to see a mention of sarcoidosis.
Heck, why shouldn’t I post about it? After all, while sarcoidosis doesn’t define me, it’s certainly a part of who I am, whether I like it or not (usually not). And posting about my sarcoidosis race lets me pay it forward to those who have helped and inspired me.
After I was diagnosed, I first saw others living with sarcoidosis on Instagram. Some were struggling like me, some were having a much tougher time than me, and some were doing things I didn’t even know were possible with this disease. But they were all living their best lives under the circumstances.
By searching hashtags such as #sarcoidosis or #sarcoidose, you will see some amazing folks. Personally, I post to celebrate another day of beating this disease. I often think, especially when I’m running, that every step is an act of defiance against sarcoidosis. It may win one day, but not today.
And after most social posts, I get to hear from someone else who has sarcoidosis. Maybe they were recently diagnosed and feel scared, like most of us are. Maybe they are a seasoned patient offering me words of encouragement. Some simply need to see another person doing the best they can with this dreaded disease.
Whatever the reason, each post introduces me to someone in this community of racers and fighters, and I get so much pleasure from meeting them. It proves I’m not alone in this — none of us are. We may have a rare disease, but we also have a whole community to look to for support.
After all, you can’t be what you can’t see.
***
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.
About the Author
Comments
DebbraP
Good read, Calvin. Thank you so much for sharing. I am glad that there is better medicine, healthcare and knowledge since you were diagnosed in 2014. This should give us hope that there will be even more progress to look forward to. Yours is an amazing story...running marathons, etc. I was diagnosed with Lung Sarc in 2019 but probably was having symptoms for a year, maybe two before that. Things worsened for me but I don't know if it's because of the Sarc or because of unrelated but very major stress. Now that some of that stress is gone, I am in the midst of rebuilding my life and just in the last few days, I feel slight improvement. Can't do much in fact, can hardly walk more than 30-50 feet without needing to rest but I am getting up more often and doing things for myself. I am on Prednisone, Singulair, Breo, Furosemide, Folic Acid and Methotrexate. I am also on oxygen 24/7. I plan to see a Rheumatologist who wanted me to try Humira injections. I was about to do that when life got in the way but don't doubt he will remember me and want to get started. He said he's had some success with Humira but of course, each case is different, we can't be put into one box. I am glad you talk about Sarcoidosis and not just write about it. Telling people is probably going to be the only way we can inform and educate them. Expect some resistance because not even my own family would listen to me. Which unfortunately is why they are no longer a part of my life. Yes, it was THAT bad and things got to THAT point. They wouldn't believe me and said I was only "playing victim". So, I was forced to move on and without them. Doesn't mean we have to leave everyone behind, just in my case it was extreme and I was abandoned. Homeless. But thanks to a caring and patient family who have taken me in (and they didn't even know me), I am rising back up and planning a life again. Articles like yours inspire me and teach. Thank you for that. Keep on keeping on!
Claire Bergeron
I truly appreciate learning about other Sarcoidosis patients and how they all present their symptoms differently. We never know from one day to the next how this disease will affect us. Some days are definitely better than others. Our symptoms fluctuate and this can complicate our lives especially in dealing with anyone who is not open to our symptoms.
Alan Bart Cameron MD
Plaquenil, Humira
Debbra,
I concur with your comments! I have been coping with Sarcoid for much longer (25+ years), and I spent years on a waiting list for a lung transplant, but have been spared that necessity as I had a much better response to therapy than anyone expected. The steroids did bad things to me- caused me to gain 150# and made me irritable, and even suffer delusions- become diabetic- but I lived.
Everyone is different, and every case is different- but few of the drugs worked well on me. I had a wedge of my lung removed which showed the worst part of my lung disease was in the basement membrane of the alveola - where O2 is exchanged for CO2- which became thickened. Inhaled drugs do not get that far down. I too was on methotrexate, as well as Plaquenil and prednisone as well as drugs for side effects like insulin, metformin, and a host of others.
I did stabilize but was unable to tolerate reduction of Prednisone below 20mg a day, so issues with fracture risk, etc. go up. I did eventually start on Remicaid (Infliximab as equivalent) which was not authorized by my insurance company for diagnosis of Sarcoidosis. The first infusion came with a price tag of $12,000. We called my diagnosis a form of Rheumatoid Arthritis that is sero-negative. (as supported by earlier diagnosis) and having already tried or not tolerated Plaquenil and methotrexate. That worked and looking at maximum allowable charges under Medicare- it came down to $3000, and after insurance negotiated reduction and paid it's share- about $700. That seems like a lot, but it is more tolerable once every 6 weeks. My lung functions are not what they were before I got sick, but they are approaching the lower levels of normal. My joint problems are NOT solved, but they are much improved.
I was able to recover enough that I returned to work, I met and married my current wife, and financially recovered enough to send my kids to colleges and graduate schools and now the grandchildren as well. I was forced into retirement due to fear of Covid, but again, I am 75 years old. Find a doctor who will listen to you, and try the TNF-a drug if he/she suggests. reconnect with family when you can- they may or may not be much help. A psychiatrist is unlikely to hurt.
be well, and keep on keeping on.
MONICA
Good Read
Caroline Pitts
Hi everyone,
I'm finally reaching out for support. I was diagnosed with neuro-sarcoidosis of the brain 2 1/2 years ago. I underwent a crainiotomy to have a biopsy taken. The sarcoids have made an unwelcome home in the durometer of my brain in the right frontal lobe and cascades down the entire back of my brain on the right side.
I've been treated with high doses of steroids, methotrexate, and now having infusions of Remicade. In the first six months, the steroid, dexamethazone (spelling?) Reduced the size of the sarcoids. Since then till present day my treatments have maintained the sarcoids ,not larger or smaller, and have been helpful in reducing the edema. I'm writing this because despite what I've been told, there must be others with brain sarcoids out there. I feel very alone having this disease and no support group.
For all who have some form of this disease, heart, lung, brain, I pray for you all and that research will one day reveal a true remedy
inderjit ohri
i am a 80 yrs old man having sacodosois for last 12 yrs it affected my lings when doctor stopped my medrol steroid but luckily it was detected early and got clreared with strong dose of steroid for about 2b moths i m on medrol 4 mg now bit humidity in raininy season is a major problem my head and legs become very stiff i reduce humidity in my room a/c cooling by about 20% and feel bit comfortable any body having similar experience will be welcomed
Alan Bart Cameron MD
You are not alone. There is a program at the U of Iowa to follow neuro- Sarcoidosis. It is not really a treatment trial, but involves some advanced imaging techniques. I was interested in driving down to participate, but my Sarcoid docs, didn't feel that I qualified as my sarcoid is mostly in remission. There are not a lot of people with neuro-sarcoidosis so if you were to be a candidate for the study (free) you might try it if your docs agree.
I have had brain surgery for shunt placement, and am doing OK mostly. So there is some help--- I wish you all the best.
DebbraP
Thank you for sharing, Alan! Your story offers me great hope. I figure I've got nothing to lose to try Humira but much to gain. Just have to get the ball rolling again with the Rheumatologist. He thinks I also have "Sarcoidmyositis" and not Polymyositis. He wanted an Xray of one hand and lab work. I think he will present the results to my insurance to show I do have a form of Arthritis so that they will cover Humira. And then there is a program (I think with makers of Humira ??) where I might qualify for $5 copays. That would be the only way I could afford the treatment. Meanwhile, I have not yet been successful at tapering off Prednisone so that I can get the Covid vaccination. Tried 3 times but after 2 weeks on 10 mg I choke/cough and struggle too much and have to go back to my usual 20mg. I'm scared of Covid but more afraid of not breathing/struggling as it a low O2 level affects my entire body, organs and tissue. Not good! I do practice safe, common sense precautions and never go out into crowds. I refuse to let Sarc overtake me, especially after what I am having to deal with (recent homelessness, loss of my husband, family turning on me). I don't play victim in fact, I think I am doing pretty good considering and I'm not going to let anyone tell me otherwise. I am just getting started on trying to rebuild my life. Fellow Sarkies with stories like yours does offer me hope and....strength. You are living proof it "can be done"! Congrats!
alan cameron md
Thanks for your support! I too am frustrated at times, despite a good medical education and years practice- this is a hard diagnosis to understand. I am not sure why you are worried about taking the vaccination while on moderately high doses of prednisone. You will not get Covid from the vaccine! Your immune response may not be as great as someone who is not on Prednisone, but it is NOT nothing, and something is better than nothing. I was on higher doses of Prednisone- but it kept me alive! I was unable to reduce my dose of Prednisone without getting sicker for 20 years - until recently-- and developed shingles (which was bloody awful) but I have gotten flu shots, DPT, and whatever CDC recommended incl. Shingles vax My oncologist, my docs at Mayo, my rheumatologist, sarcoid pulmonary doc, endocrinologist, all reached out to me to encourage me to vaccinate, and then to get the booster. I bought the N 95 masks online, but as I told my family- a seat belt does not guarantee survival in a car crash--- I would hate to be caught dead without one!. If the insurance refuses to pay for your medications- IF the medication is "medically necessary" and known to most providers in the appropriate specialty to be safe and effective. Your provider can appeal the decision to not cover to a third party- usually you will win. Wishing you the best, and stay safe.
Tamra
Hey Caroline
I have had neurosarcoidosis for nearly 5 years. You are definitely not alone even though only about 4% of us have neuro.
There is a facebook group with 3.7k members https://www.facebook.com/groups/297037270495237.
And like you i have a 6 weekly infusion, I have 750mg twice a day Mycophenolate, and have been weening down my steroids again from my latest flare in May which they found it also in my brain stem, which is my second brain site. Every time i lower my steroids i have an episode including a stroke in 2019.
Down here in Melbourne Australia I have less allies because it is even less common - but i look to my American cousins for wisdom and to be honest symptoms to work out are they in my head or "in my head" such as a very tight calf which was verified by a fellow sarcie who also has numb body parts and a tight left calf. John Carlin has it in his brain stem and does a great podcast https://www.facebook.com/SarcFighter/.
I would recommend Karen Duffy book - https://en.wikipedia.org/wiki/Karen_Duffy. Also a neurosarcoidosis fighter who made me appreciate it could be a lot worse.
I have an amazing brain dr but ultimately the more you read, know, understand but better your situation will be. Yes I agree no cure is coming in the short term due to multiple reasons but you can find hope that others are in the same situation.