John Carlin opens up about his battle with sarcoidosis 

Hi John, I was diagnosed with Saroidosis almost 9yrs ago at the age of 50, since my diagnosis my life has not been the same. I live here in Australia and back then I was told take the prednisone and you will be better in 6 months, I knew my body wasn’t getting better and other systems were developing but because sarcoidosis predominantly affects the lungs but my lungs didn’t have it. For 2 yrs i was seeking 2nd, 3rd and 4 th opinions but they were all respiratory drs so every time I saw one I had breathing tests with them all being perfect but I knew I wasn’t. I finally found a Professor who explained that the sarcoidosis was not in my lungs but all my lymph nodes , which explained that the masses were surrounding my heart and lungs and was pushing on them making it difficult to breathe and exercise. I put on 20 kg in 8 weeks from the high doses of prednisone which also caused erosion of my bones and especially my knees. I’ve had to have 2 total knee replacements. I now have 6 different specialties treating me for all the areas that are affected by the sarc. I’ve been on chemo once a week for 8 yrs with a second version fortnightly. I’m 58 and am being cared for by my 75 yr old husband who is a saint, due to my disabilities. I have chronic pain and due to the chemo line in my chest I almost died about 2 months ago from a massive blood clot that attached to the line and blocked one of the main vessels that drains blood from the brain and basically anything above my ribs. Thankfully I have a hotline to all my drs and they know if I tell them something doesn’t feel right it’s straight to hospital and they all come together to solve what is happening. I’m sorry this is long winded but maybe there are others who are just going along with their GP but still don’t feel right, and I say keep pushing until you get results and proper treatment. In Australia there is no drs who are just sarcoidosis drs so it is very possible you may end up with a team of specialties, I know that my drs have best interests at heart and I praise God that I have them and we don’t use steroids now unless it’s a last resort because it’s not always the best treatment, it might be the easy option. John I hope all is going well for you now and I would like to hear how your treatment helps you. Cheers from Australia 🙏🦋🇦🇺

I hope you continue to feel better, sir. Came over from the post on your son's vlog, and thanks for sharing your story.

Prayers are up for you Mr. Carlin. Learned about this from a post your son did for his vlog sharing the video. I pray for healing for you and for continued growing strength.

That's a courageous thing you're doing there: Sharing your weakness so it does not have to be someone else's. Raising awareness is always a worthy cause.

I came here to see your story after being a huge fan of your Sarc Fighter podcast. Keep up the amazing work that you do and from one Scar Fighter to another.... You are not alone my friend.

Thats so upsetting. Get Well Soon

I almost cried. Get well soon, Mr Carlin and all my prayers go to you and your family.

Nothing but the Best Results for you Mr. Carlin. I’ve been diagnosed since 2011, with that horrible disease of the lungs, now the heart is affected, challenges.... but I’ll continue to do my best. 🙏🏾🙏

I cannot only sympathize with you; I can empathize. Having been diagnosed in 2006 with this awful disease. I can barely work, I can barely breathe. It is also an extremely painful disease. I think it is important for people to understand this disease is so varied it can blind one person, cause another to be a quadriplegic, or have migraines, nerve pain, deafness, insomnia, dementia, short term memory loss, liver, kidney and heart failure. There is not one system of the body it cannot touch. My best wishes and prayers out to you Mr. Carlin....from one sarkie to another.

Prayers for you and your family. I now live near Bristol but I'm originally from Puladki. I've watched John Carlin many an evening. So many prayer going up

Praying for you, Mr. Carlin! I follow your sons on RU-vid and have met all 3 of them. You must truly be an amazing father to have raised such fine young men. I have Celiac disease and my sister has Lupus, so autoimmune diseases run in our family. I hope you are able to have a complete recovery and get back to running soon!!

My prayers of healings and the presence of God are with your dad and family.

Get well soon, Mr. Carlin

I have been dealing with an autoimmune condition which they still have not diagnosed since November of 2017. It’s so exhausting. Thank you for sharing your story you are so fortunate to have good doctors

John Carlin you are amazing ❤️ I hope you get through this and come out better than ever!

I feel like You've been in my life for a looonnngggg time!!! Best wishes and much love

Thanks for sharing this! I have Neurosurc also, brain & spine. I was paralyzed from the waist down in 2016. Walking 2 years later with a cane & a walker I fight daily. Thanks to Cleveland Clinic also for saving my life 💜 again so blessed you put your story out here to advocate all of us!

Lets go my friend im battling it to attacked my lungs and swoll my foot. Im still young but listening to you will help me trought my life to help prevent or deal with it best wishes xxx

Been dealing with neurosarcoidosis since 1993. I too was very active prior to my diagnosis.

First i want to say you will be in my prayers. I have had sarcoid since 2007-8 . when first diagnosed i had it in my T4 and C3 also my left lung (now collapsed w scar tissue but my right lung is ok) i have cirhosis because of methotrexate ,remicade and humira . i camt take prednisone because of the bone side effets . i now have it in my stomach , mouth, every lymphnode spleen enlarged, liver , skin and brain. I try to keep a positive attitude because i feel that is key to this disease. It came when i was at the peak of my career and left me on oxygen and pretty much ended my career . I have good times where im able to work but then the fatigue sets in and for every good day i have 3 bed days. My biggest frustration is there is ZERO MONEY FOR RESEARCH. So i want to TRULY thank you for sharing your health issues every public face slowly brings light to this disease. We need that. Thousands like myself are tired of getting shrugged shoulders from frustrated doctors. Most of us can not afford to travel to specialist which are few in USA for sarcoid. They still don't know how it is contracted or developed within a human body. The majority of meds are prednisone or methotrexate which reek havoc on the body. And you will always be sent to a pulmonologist even if. You have other organs more effected than your lungs because the disease is almost always starting in the lungs. Thank you for giving the public a view not only into your personal health issues but also into a disease that needs to be researched and figured out for all of us who's faces are just not recognized enough to make a difference. #sarcoidneedsresearch

I hope you continue to improve. I was diagnosed with sarcoidosis 8years ago in my liver. It's progress to cirrhosis and now it looks as though I will need to have a liver transplant. This disease is horrendous it slowly kills you.

You have my condolences.

Thank you for advoacating for our disease John.

Prayers🙏🙏🙏

Thanks for sharing.

i have sarcoidosis too, it is a huge struggle! i also have Meniere's disease (which is also an autoimmune disease). thanks for sharing! hope your are doing better!

I was given prednisone in the military for lung or feet issues. Then 25 years later after being diagnosed with PTSD and Factor V Leiden, I got diagnosed with sarcoidosis. I did not get a lymph removed even tho I had hilar lymphanopathy. I got doxycyline, flucanozole and started taking good vitamins individually and I got better.

You aren't the only one John, it's a big club! I used to ski, scuba dive and do other outdoor sports.

I have sarc, and also the balled up socks, so I know what you mean. My sarc flared up BECAUSE of chemo. (Breast cancer). Gabepenton helps my numbness a lot. Btw, a long round of prednisone helped my sarc lung situation, and made me feel 100% better, but when I came off of prednisone, pain and numbness came back. Hope all goes well for you.

Mine was found after having Covid..difficulty breathing..then an mri showed granulomas on my liver and spleen ..still being tested..this will be my my 8 th diagnosis with an autoimmune disease..

I suffered with sarcoidosis of the lung for 3 years. Had a cough for a few weeks and then pneumonia. I have been in remission since then (1993).

Best wishes

My prayers are going out to you.

I was diagnosed with it in my lungs in 2003 and sleeping with oxygen since 2010. My biggest complaint is difficulty breathing. I have discovered noticeable improvement eating a very low - no carb diet. Please try it for yourself and tell your doctor and social media your results.

This is a great piece. I’ve had Sarcoidosis for 15 years now. Not too many people are appreciative of the systems and treatment Sarcoid patients go through. Thank you, John and your team for presenting this. God bless

I was diagnosed with sarc back in 2003. woke up one morning feeling like I had been run over by a semi-truck it took over a year to get diagnosed and only after they did a CT scan for paraneoplastic syndrome that they found I had sarc. the pain turned out to be sarcoidosis associated small-fiber polyneuropathy Never was treated for the sarc because I had gone into remission on my own. but the small fiber neuropathy pain sleep apnea and insomnia have remained.

I pray for complete healing, I love with sarcoidosis and it’s a very difficult/tricky disease. But God heals ❤

I have systemic Sarcoidosis. I'm so scared

well I seem to have it throughout my whole body. started with pain in my spine for years and couldn't get any answers for over 9 yrs. now these granular lumps are throughout all my tissues :((

Wow! I went though the same symptoms of Neuro-Sarcoidosis.. it’s a life changing disease.🙏😩

I'm surprised he's functioning at the level he demonstrates in this report. As a sarcoidosis patient myself, ( lungs, lymph nodes ) I find it difficult to get through a day without fatigue kicking in.

I just was diagnosed with this last friday 7 days after my 44 birthday

Yay John.

A rare disease What happened in his life before he developed sarcoidosis??

Mate i feel sorry for you i was diagnosed 10 years ago since then my life has been hell ,i have had complete renal failure, its in my liver my lungs my eyes that stinking prednisone is hell ,i know that if anyone thats got it there life is f....d

I was an avid cyclist for decades. Now I don't cycle at all. I walk slowly due to Sarcoidosis in my lungs.

This is exactly me..its like im talking bout myself

OUR IDENTITY IS IN CHRIST JESUS ALONE, 2 CORINTHIANS 5:17.

I am battling with Sarcoidosis I hate every minute !!! It took over everything of my body ... I used to.run over 7 miles now I can't It started in my lungs then it move every where in my body ... I can not take steriods it hurt my stomach lining and my weight... I only using cancer medicine only thing that keep me alive stage 4 ... If I clean the house its make me very very tired. If I do my excercise I try to get a least one hour if I can...I really hate it cause it overtake my body...

I have scardios in my chest big as football it attacks me I have bad days and good days I have skin rashes not taking any thing Dr wants to put me on Humira the shots

ive had stage 3 cancer, ular tme, sleep apnoea, diabetes, pinned claviclé tdeth knocked out, AND Lung sarcoidosis Somé whingé abbout anything smh

This is the worse disease ever! I wouldn’t worry sh this on anyone. I found this looking for new symptoms with my hands. I have been fighting this disease since my youngest daughter was born. She will be 32 this year. It’s not easy with other health issues that came after this diagnosis. Poor health insurance makes it even worse.

Pride, arrogance, full of yourself, no pity for folks like this, I'm in control ,no sir god is .I can do this till I'm eighty years old, no you can't sir, you got ahead of yourself and forgot god giveth and taketh away in a moments notice, that's a lesson in life don't take anything for granted including your health , karma don't care who you are what walk of life you come from how much money you got ect, it just strikes especially the non believers lovers of themselves!!!

It's not an autoimmune disease.....

Sarcoidosis awareness month is in April in Australia. This disease is affecting more people by the day, but we need drs and specialists to understand and learn about this disease so they can help their patients sooner. So many times I was told it affects the lungs but most people don’t know they have it, some drs explained it as if they read it from the internet word for word. Sarcoidosis is also known as the Snowflake ❄️ disease as no 2 cases are the same.🙏🫶🦋🇦🇺