Sarcoidosis Patient Experiences: Ellen, Erica, and Kim

You are not alone! Listening to others and sharing your sarcoidosis story can be so helpful. ⁠
We were so excited to have a panel of sarcoidosis patients with us for our March Speaker Series. Ellen, Kim, and Erika are going to share their sarcoidosis journey.

[@endrebandy]

örülök, hogy találkoztunk! Nekem az 1970-es években találták meg a sarcoidosis betegségemet a tüdőmön. IV-es stádiumban voltak mikor szövettannal igazolták. Magyarországon az orvosok akkor még alig ismerték, ezt a betegséget, de volt Debrecenben egy professzor, akit ha végre megtaláltak, akkor prednizolonnal kezdtek. Fél év után csípőfájdalom miatt az összes cortizon származékot kipróbálták, de a csípőimben a femur elhalt. 4 évig minden létezőt kipróbáltak, de ha elhagyták a cortizont, megint elindult a gyulladás. Aztán a saját döntésem az volt, hogy gyógyszereket nem szedek. Akkor fejlesztette dr. Béres József a Béres cseppet, ami nyomelekből ásványi anyagokból állt és stimulálta az immunrendszert. Csak ezt szedtem ezután, és 10 év alatt írta le a professzorom, hogy elmult a sarcoidózis, már csak hegek maradtak a tüdőmön. ma 45 évvel a kezdetek után szedem a Béres cseppet, a tüdőm, szívem gyengélkedik, de élek, mert sose adtam fel a reményt!

[@IsaMoralesAl]

I developed Sarcoidosis in 2009, initial diagnosis was Hodgkin cancer. Later after biopsies it was confirmed to be GI, stomach and lymph nodes sarcoidosis. Later throughout the years, it has spread to liver, kidneys, lungs, around my heart and eyes. I’m searching for support and guidance on getting this under control without medication.

[@lifeandbreathfoundation]

Wow! It sounds like you have had quite a journey! You are welcome to join our Sarcoidosis Support Group and discuss what you are doing and what other patients are doing.. Register here...us02web.zoom.us/meeting/register/tZcpcOusrDovHdG6aVzTmrdejW_c217aOUt8

[@lolitaalmostgrown]

Why not prednisone?

[@Anne--Marie]

The Bernie Mac Foundation might also help.

[@vangard3415]

I hate disappoint you i have had my sarcoidoses for 10 years i am 72 years ,before 62 i was so dam healthey and now i wonder how long i have left ,

[@theresa1823]

Was diagnosed in 1976, they thought it was hodgkins disease. Took biopsy of lymph nodes and was diagnosed with sarcoidosis. It also affected my eyes. I was put on steroids for 9 months. I am in remission. My sister was diagnosed a few years before me, she almost died before they found out it was sarcoidosis. She was in remission too but is having some testing to see if it is back. Just put myself on a gluten free, dairy free diet and i feel healthier.

[@erikat5678]

Theresa, I am sorry you and your sister have Sarcoidosis and your struggles but very excited to hear about your remission and hope your sister also stays in remission. Diet and exercise has helped me immensely; but some folks have to be on medication and that is okay too! Stay strong! 🤗❤️

[@alouise3557]

Wow over 40 years with this? That's incredible.

[@MatureTaks]

I went through bronchoscopy today and reports are awaiting but elevated ACE levels convincing my doctor that it's sarcoidosis. I'm 41 male from North India. Really challenging for me and my family.

[@willard398]

Diagnosed in 2007. I have Pulmonary and Cardiac Sarcoidosis via a biopsy and have a pacemaker. It’s in my eyes, on my skin. Arthritis in my hips( 2 replacement, Both knees both replaced, Awaiting Spinal lumbar fusion. PTSD & TBI. It’s a nightmare.

[@joannajohnson2669]

What has it done to your eyes

[@leejenkins7651]

Thank you all involved in this video 🎉

[@nicholebyers1611]

So grateful I found this. Thank you for sharing your journeys. I recently was diagnosed with neuro sarcoidosis. I related to the last testimony. I’m alittle overwhelmed & scared but coming across this video has brought some peace of mind for the future. Thanks again and how can I get connected?

[@cherylcrosby3377]

thank you for this platform i had a thoracic biopsy in June and was diagnosed with stage 2 sarcoidosis I also have rheumatoid and osteri arthritis i couldn't find out why i kept having headaches and hair loss

[@gracenardelli3763]

Does stress contribute to the condition

[@TheCambra]

Stress will weaken your immune system and caused lots of things

[@mist4926]

Erica what are the side effects from?

[@TheCambra]

Medication