Behind the Mystery of Sarcoidosis: A Rare Disease That Can Cause Shortness of Breath, Chest Pain
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- Опубліковано 5 гру 2021
- Sarcoidosis is an inflammatory disease that can affect almost any organ in the body, but most commonly targets the lungs and lymph nodes. Due to the high unmet medical need, there is an urgency for effective and accessible treatment options. We sat down with Dr. Peter Sporn at Northwestern Medical Center to learn more. We also met Cheryl who spent nearly 2 decades searching for a team of doctors who would help manage and treat her sarcoidosis. She found a strong support system in The Foundation for Sarcoidosis Research where she met a community of individuals who understood her journey, while also providing support and guidance to other patients newly diagnosed.
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My friend was diagnosed with Sarcoidosis in 2009, and unfortunately for her, it attacked her lungs and She was placed on the lung transplant list. She received donor lungs at the University of Pennsylvania and thankfully, today is still thriving. Sarcoidosis needs more attention in my opinion.
Just found out today that I have this disease. I am going to trust in the lord, like I always do for complete healing. I will not depend on drugs medication. please keep me in prayer🙏🏾 I had to undergo two surgeries, and they said it look like leukemia but I just got the results today and they’re saying this is what it is. I knew something was wrong because it’s so hard for me to take a really deep breath and if I lay on my chest, it’s so hard for me to breathe. I get very tired so easily and fatigued.
God made us and we each have callings in our life. I firmly believe he places some people to be doctors, nurses, scientists, researchers etc. I am a RN and felt called to work in ICU. He gives the researchers the knowledge to make medicines. God is providing medications for you. I encourage you to trust in those he gave knowledge too. If you were in a bad car wreck you would let the professionals take you to surgery to save your legs or help with a punctured lung. Let God do His work in His children so they can help you.
😢 My baby brother passed away this February 2023 at 34 from Sarcoidosis ... He would have been 35 this week 9/12/2023. It took a while to diagnose but he had a very bad case of it. So painfully sad and just still don't feel real 😢. Lesions all over. Just reeked havoc in multiple organs especially the lungs 🫁
😢 hugs and I pray that you allow yourself time to grieve . Lord help this person to feel comfortable from you.
Sorry for your loss
Great video I can relate to. Thought I was losing my mind as most doctors and nurses haven’t a clue about it. I still work but feel like crap with fatigue, no point talking about it to people who can’t understand as they just don’t see your struggles. Brilliant video thank you 🙏🏻
Hi there. I am so sorry you are having to go through this. My sister was diagnosed a year ago and because it is so uncommon, we were all given an advancing cancer scare after the scans but before the biopsies. Once the biopsies and a few of the other tests came back we were given the relief after thinking the absolute worst for many weeks. Unfortunately though, the sarcoidosis has spread from her chest to lungs and she is struggling a lot. She does so much for everyone and is an amazing sister and I hate that I can't find a way to help her, all I can do is message her and try help her through the bad days and be thankful for her good days.
I am so sorry that so few people understand what you are going through. I hope those closest to you are understanding of your struggles and are supporting you. ❤X
I have Pulmonary sarcoidosis too I’m 31 I’ve had it for 11 years. I’m so tired all the time. I wish the best for you. Ty for the video!
I have granulomas in both testicles and very low testosterone.. so you maybe wanna check that out. It can affect t levels, and in that case, like mine, you get extreme fatique and it feels horrible. Sweting is also very bad. Testosterone helps for the fatique A LOT.. it can be unnoticeable in testes and it can affect t levels from kidneys too.. I recommend taking some DHEA and Tesroterone, for fatique and dhea for neuro protection.
Ultrasound and MRI is the only way to see, if testes are affected.. i dont know about that adrenal granulomas but they affect widely in your hormonal system..
DHEA also uppers your mood and it gives some energy too..
It's caused from drug use ! Crack co)caine use , sorry but the truth is the truth . Stop abusing drugs ! Bernie Mac and Gerald levert both died due to this illness , so that tells you what they were doing 🤷🏾♂️ . The truth will set you free , and hopefully prevent you from using illegal illicit drugs and acquiring this rare disease ...
Turmeric.
Im 54 years old. All my doctors thought i had cancer. After 2 biopsies and a Vats procedure it was determined i had sarcoidosis. The disease looks like cancer from all my scans. It has spread to my heart and possibly my bones and spleen. The doctors have told me they never seen a case like mine and is very rare the way it has spread through my body. Im currently on steroids. Im waiting to get into a clinic that specializes in this disease. Im also on heart medications to control my heart rate. Other than my abnormal heart rate my cough is gone and night sweats disappeared since on the steroids. My breathing has improved so thats a positive. Im very scared to fhe prognosis of this disease. Just taking it one day at a time and hopefully this terrible disease goes into some type of remission. My family was vety happy i didn't have cancer. But this disease is no joke and im very scared for my future.
My bf has this in UK. He now has a pacemaker and defibrillator. Had a biopsy, pet scan, MRI, CT. He has now eptopic heart beats. He will be taking a blast of steroids for month
He has sarcoids in lymph nodes heart lungs liver bone marrow spleen
I’m curious did you loose weight or have a fever did you have dry bumps. Were they itchy at times.
Hope you get better soon
Can we get the views up on this very important video.
This is the best video about sarcoidosis I’ve seen yet. How can we get more views on this?
We lost our beautiful Mother 6/12/23 due to complications with sarcoidosis. She was diagnosed 13 years ago. It first started in her lungs, then it went to her eyes and skin. We found out after her passing via autopsy, that it was extremely aggressive in her spleen and liver. Amyloidosis (not sure if AA/AL) was found in her colon, spleen, and liver post passing. She fought a very difficult battle. More research and early intervention is needed. Since there is not enough research on if sarcoidosis can genetically be passed, it’s best to get bloodwork and chest X-rays early. Wishing everyone all the best and prayers for those who are fighting the battle or who have lost a loved one due to this complex disease.
Thanks for this, will share this with friends and family, this will help explain to them what I'm dealing with in a simple, straightforward way.
Misdiagnosed with amyloidosis in 2018, the correctly diagnosed in late 2019.
Now on Prednisolone and painkillers, don't know from one day to the next how bad it will be , very random illness, I consider myself as one of the lucky ones in terms of severity.
Education education education
Surprised how many people think I'm lying because of their ignorance, this really highlighted the tip of the iceberg for me with conditions like this being swept aside and ignored by professionals,
Peace and love everyone, spread love and understanding ❤️
My father died from sarcoidosis. It hit his lungs and heart hard and he died from congestive heart failure as a result. The last few years of his life were absolutely horrible. He described it as feeling like someone had put a plastic bag over his head and was continually suffocating him, despite his being on oxygen all the time.
I was diagnosed in 1984 with sarcoidosis by my dermatologist. She took a plug of skin from my leg near my ankle. At the time of onset I’ll call it i woke one morning thinking I’d had a stroke, come to find out it was Bells Palsy/facial paralysis commonly associated with sarcoidosis. From there my journey with Bells Palsy, Uveitis, coughing and a scaley rash on my lower legs for 30 days. After all that I was left wearing eye glasses and developed arthritis in both hips, other than that I THANK GOD 🙏 have been symptom free. I did smoke for about 30 years so I now have COPD and asthma but i am good 🙏….. this disease is tricky so my advise is to find THAT doctor who knows something about sarcoidosis……
Sarcoidos is the strangest disease. You get rashes, night sweats, coughing, wheezing... But the one thing that is most frustrating is fatigue. Since 04 , when I was officially diagnosed with sarcoidosis, this is the toughest of all. Then my sarcoid will go dormant for a while. But the next thing you realize, it's active again. The inhalers are key, as is walking for me. I'm 66, almost 67 years old now. I just do what I need to. I give the rest to the Lord. I'm sure a lot of you know these same symptoms. Best wishes, God bless you all.
My Xbox friend just passed due to this illness, played with him for almost a decade until he told me. By then he didn’t have much time, thank you for this it really helped me get a small glimpse into what he had to deal with.
How did this happen my bf was so told steroids would cureit
Thank you so very much for this video! I have pulmonary sarc and I thank God that it is in remission. I still cough a lot after a good laugh though!
I am thankful that the young lady in this video has found great doctors and I pray that she will continue to improve and that one day be completely healed.
Hi, did you take an medication or anti-botics to help ur sarcoid go into remission? Have you done anything spefically you think may have helped it go into remission? Thanks
It actually makes me feel better watching this video I thought it was only me that has Sarcoidosis
It's caused from drug use ! Crack co)caine use , sorry but the truth is the truth . Stop abusing drugs ! Bernie Mac and Gerald levert both died due to this illness , so that tells you what they were doing 🤷🏾♂️ . The truth will set you free , and hopefully prevent you from using illegal illicit drugs and acquiring this rare disease ...
Praise God for you, your courage and strength. I am so sorry that you did all the right things and Dr’s did not listen. You have a ❤ of forgiveness, those Dr’s need to be sued. Maybe your condition may not have gotten to this point. I pray you are doing better and being a survivor . You have turned your mess into a message. 🙏🏼🙏🏼🙏🏼👏🏽👏🏽❤️
I had a friend who passed of this disease..this is the first time I've heard of this disease
My girlfriend has this...she pointed me to this webisode. Very informative. She is my life. As a ex addict with 5 years sobriety and severe mental health issues I understand struggle. She is such a a good person. All I want is to make her happy....please continue your research and your videos. God bless .
I’ve been diagnosed with pulmonary sarcoidosis . I have scaring on my lungs. It is very hard to breathe now, years after my initial diagnosis.
I take cough medicine to suppress the cough. It is scary. Normal actives get more difficult as time goes on.
Night coughing is very scary. I hope for some care in future
Very informative video. All the best to you!
Wow thank you so much for this video and for sharing this! I have Neurosarcoidosis and its been a crazy journey also.. I have recently started my channel to share my story too x
Thanks for sharing your information.
If you're reading this ....start fasting and drink a gallon of water everyday, drink your teas ,take no medications ,workout,go on a healthy diet..light/no sugars or salt low carbs ..Take a multivitamins/creatine /breathing exercises,meditation..follow this daily start of slowly and your body will heal it self from ALL diseases..and keep faith 🙏 trust the process..
I got sarcoidosis when i was 24 years old im now almost 60 i have had very very little help from my doctors they all down play this awful disease i retired at age 50 due to progressive massive fibrosis of my lungs this has lead to pulmonary hypertension and sever spinal arthritis the fatigue is awful but my doctor says this condition shouldn't give me fatigue i seriously don't think the doctors here in the uk give to much attention to this awful condition
I agree. Drs in UK downplay it
Good luck finding a doctor that will acknowledge the fact that you even have it though. I've had it since '95 and have to live with body pain like I've never experienced before and fatigue that makes you want to just not wake up at all just so you can struggle through the pain all day. It's not only frustrating, it's plain exhausting!
@baxter and Brooklyn twenty8. I ultimately had to leave my job because just working 2 days per week was so unbelievably exhausting.
I feel you I’m 31 and I’ve been so tired for years. My doctors don’t do anything except give me scans then tell me yup it’s still there.
My mother has had it for 5 years, her doctor didnt want to treat her until I harassed him about steroids. But I discovered removing artificial sweetners from her diet helped a lot.
I was diagnosed with Sarcoidosis of the liver in 2013. I currently take 150mg of Azathioprine to suppress the symptoms. Most of the time I feel very fatigue. Thank you for sharing!
It's caused from drug use ! Crack co)caine use , sorry but the truth is the truth . Stop abusing drugs ! Bernie Mac and Gerald levert both died due to this illness , so that tells you what they were doing 🤷🏾♂️ . The truth will set you free , and hopefully prevent you from using illegal illicit drugs and acquiring this rare disease ... 🤔Stop using
Hello
What are the symptoms of sarcoidosis of the liver?
I have sarcoid. I was diagnosed in 1989. I would like to know why becoming overweight is not considered a symptom? Also excercise is the worst thing we can do. I went from 2 to 4 damage in my lungs before I realized that it was because of exerting myself. If your body is not getting enough oxygen it damages us greatly. I am proof of this. I have dealt with it attacking starting in 2014 after being outside all day in the sun. I winded up in bed not able to breath or move. They sun is our enemy also.
Did they give you any medicine for this and what was the symptoms that you had
Then why didn't you try lose the weight start there first and work on yourself..fast,drink water,diet,and exercises
@@scottmr6744 I have so many symptoms it would take a novel to answer. I am finally receiving 2 meds to help with the sarcoid. I am still struggling.
you obviously did not read what I wrote. It is impossible to diet or excercise with this disease. Get it?@@Family197-gc6je
I have sarcoidosis. This is an awful illness but manageable for me so far.
It's caused from drug use ! Crack co)caine use , sorry but the truth is the truth . Stop abusing drugs ! Bernie Mac and Gerald levert both died due to this illness , so that tells you what they were doing 🤷🏾♂️ . The truth will set you free , and hopefully prevent you from using illegal illicit drugs and acquiring this rare disease ... Stop using and it'll probably disappear or at least get 90%better . The lies are what ki/ll you .
@@jasonphillipmccauley7103 You need to stop because what you’re saying is incorrect and offensive. I’ve had Sarc for 6 years, and I’ve never had an illicit drug in my life. 💯
Good video! I was diagnosed with pulmonary sarcoidosis after a 7 day hospital stay for what the doctors thought was a severe asthma attack. I managed to get lucky on my follow up visit and get referred to a pulmonologist who suspected sarcoidosis after viewing the C/T scan from the hospital. She referred me to an interventional pulmonologist who did a biopsy and confirmed that it was sarcoidosis. It also affects my heart. I have had a defibrillator installed as a preventative measure in case the sarcoidosis interferes with the electrical signals to the heart. It's been a struggle finding the right treatment, but recently my rheumatologist started me on Humira. It is starting to show some promising signs.
They did me the same way but they suspect me to having cancer but the cancer doctor said it's not cancer it's sarcoidosis pulmonary
My beautiful husband 😢died in 1996 at 34 never knowing anything i had no idea he was so seriously 💔 ill. Was so devastating for our family. Still not enough know about this . ❤❤❤❤
My mom is fighting for her life with this and lymphoma as the two often present similar effects.
I had shortness of breath and a persistent cough for 5 yrs before I had a Ross procedure performed. After that, lose to 95% of the shortness of breath disappeared. While the persistent cough is still ongoing but has not been linked or attributed to sarcoidosis. I was not diagnosed with sarcoidosis until Nov. 2023, 14 months after my heart surgery. The remaining problems I have with shortness of breath is when I attempt to pick up the pace when it comes to exerting myself or walking faster than what I normally do.
It attacked my heart and effectively killed the nerves to my ventricle necessitating the installation of a Pacemaker.
I now feel at 54 like I did in my 30s now that my heart is fully functioning again.
Thank God there was no muscle or valve damage and my arteries were free of any calcification or restriction.
In fact, they told me my heart was "athletic" in muscle structure. It just wasn't firing on the lower half and the atria was doing ALL the work.
god bless congrats
I've had ik since 2015. I had a bad rash and with hormone cream it was gone in a few months. It came back a few months ago. I am always tired. Pain in my legs. Arthritic pain in my hands and feet. It is surrounding my hart and lungs but not in them. What are you guys doing to combat this? My doctor doesn't think prednisone is needed so we went ciclesonide. But I was wondering what people are doing with say, working out, eating specific foods etc.
I was diagnosed on radiology alone by the pulmonologist at the Denver va.
I have had sarcoidosis for 20 odd years I now have pulmonary fibrosis.
I have the same problem 😕 since 2004
I’m a 66 yr old Navy Veteran. I have Pulmonary & Cardiac Sarcoidosis with Pacemaker. It just gets worse and worse. I’m treated with Methotrexate injections every week.
I've got skin leasion all over my skin and have pulmonary
Wow I got scabs on my scalp as well I was wondering why they came 😢
My brother was found dead. Cause of death asphyxiation due to sarcoidosis. There wa too much scar tissue on the lungs. Unable to breathe and died in his sleep. What a shock. I knew he had this disease but because he always appeared fit and had a relaxed attitude, never thought it could be terminal. 😢 who would have known. RIP my beautiful brother Simon ❤❤❤❤
Sorry for your loss
Remember too take your vitamin D also
100%
Yea for sure
To much vitamin D is not good. Sun can give you uvb in the afternoon. Go out at 2pm for about 30 minutes.
I have granulomas in my right lung. I have a constant cough. Get very short of breath. I get very tired easily,
Did you have covid before this was found, by chance?
A mass was just found on my lung which started with symptoms of severe reflux and drops of blood found in my phlegm (along with one episode of about a teaspoon of blood i had to cough up) a few months after covid. I had a 1cm nodule found in right lung 5 years ago that never grew and the mass that's there now is a few centimeters. This time, the blood caused me up go to the ER which prompted a ct scan and doctors told me i probably had lung cancer. Biopsy said negative for cancer and it was a non-necrotizing granuloma, with possible sarcoidosis. The infectious disease doctor read the report and just told me "probably sarcoidosis" but didn't say much else other than it could randomly go away and to go back to Pulmonologist and I'm headed there today. I have no coughing and no shortness of breath. I found articles that indicate it could be related to covid, but my smaller nodule wasn't tested so I don't know if that one is linked. Both are in my right lung and only the one was biopsied.
What's your history with these nodules? How many? How big? Do they grow? I have minimal shortness of breath which is surprising as I already have copd after a long history of smoking though I quit 6 months ago.
OK. So it’s a _rare_ disease. My stupid doctor wouldn’t even tell me what she thought I had.
How many patients with sarcoidosis also have APS?
hi, my very close relative age 35 is diagnosed with this disease two years ago. he had been admitted to the emergency three,four-time due to anaphylactic shock and lost almost 10kg of weight. I need a suggestion what should he eat to gain some weight and improve his quality of life? He had been thru anaphylactic shock after eating a meal and doing minor exercises. The doctor said he might have been allergic to some food but don't know the exact cause of the attack. I have done five years of Doctor of Pharmacy studies Thus they always ask me to recommend a good diet.
Avocados help with weight. Eat fruit and vegetables
One of my friend is suffering with sarcoidosis since 2018 which has effected multiple organs. He has started taking steroid medicines. Also, he got side effects of sarcordosis like onculor,dermao, kidney stones ,calcuim deffeciency....etc. Unfortunately he was involved in a legal case and there are possibilities of getting Jail Term. Is it Safe for him to suffer in Jail with this Disease and its side effects. Due to Jail, his health may go more worse ?
Why mix with a bad person
I just got diagnosed with pulimary sarcoidosis. Does anyone have any tips for the shortness of breath? I can handle the pain but I just want to take a normal breath again
Hey, did you by chance have covid a few months prior? I was diagnosed last week, and had covid late December. I have a significant sized "mass" on the lung and biopsy noted its granulomatous disease, possibly sarcoidosis. Then, an infectious disease doc looked at biopsy and said probably sarcoidosis yet told me very little about it and said it can go away spontaneously. I had a 1cm nodule found a few years ago that's still there. I go to Pulmonologist in a couple of hours to see what he says. Google shows a large percentage of people have it randomly go away. I linked this to possible covid, because it came on the same time as severe acid reflux and post nasal drip along with bad hair shedding that lasted a month and a half. I ended up finding articles showing a few studies linking random sarcoidosis after covid. I have minimal shortness of breath though.
@A Louise I have actually not caught covid at all through the pandemic or recently. My doctor also didn't have that much to say about the disease it self which seems to be the only consistent thing (that they really don't know much). Im.not an expert just have my own personal experience. I haven't had and hair loss but I did have some crazy night sweats and was even coughing up blood which is rare with sarcoidosis. But to answer your question no I haven't caught covid, at least not to my knowledge.
there is a video I came across called breathing club. (I did not watch all of it but I will look for it and share it with tou)
Try breathing exercises..fasting, drink a gallon of water,change your diet,workout
I have sarcoidosis
I was diagnosed april 12th 2023 and ima fight this an win this battle gods will
The doctor says I may have this what did they do to diagnose this what type of test what kind of symptoms are you having and what medications that they give you
@@scottmr6744 prednisone and abitutaral enhaler and some SUL antibiotics but I'm still going thru treatment to see what's best for me
There is no god
I am not totally convinced that sarcoidosis is not a vitamin deficiency or an effect from it. Like with pellagra in the 1930's - and they thought that was a disease back then but it was a niacin deficiency- something simple might be the answer. Or it might come from a genetic mutation. I also have Factor v leiden, and yes sarcoidosis. In this respect, if the factor v leiden is doing it then immune suppressants won't work. So far doxycycline and vitamin therapy - taking vitamins separately- has helped me. I really suspect something like a deficiency in B6 or iodine as being the thing that might set off the sarcoidosis cascade. Many with sarcoidosis are told by their doctors that the intrinsic factor for b12 is messed up. However many people with parasites in their body will experience a b12 deficiency.
That seems a valid point. I have used Azithromycin 250 mgs and i can feel changes in the exacerbations
Following comments here. Just recently diagnosed a couple months post covid.
I agree.. alot of sickness is happening because cause we're not getting enough vitamins and minerals in our body's and not keeping up with our blood work ...if we fast ,drink lots of water and eat right we all can be cured
Girl I was diagnosed I have neurological sarcoidosis, I try to tell doctors no one ever helps me I can sleep for days!!!! I have blisters im so afraid it’s back it started at 14 im About to be 40
I’m. So scared
@@melanieperry2798 j have same thing no dinos
@@melanieperry2798how are you now?
I bind the spirit of sarcoidosis and I curse it's roots in Jesus Christ name
🎉🎉AMEN
Don't do that religion
How long did it take for the steroids to work and take away the cough?
I had a cough for years due to sarcoidosis. My nurse started me on Benzonatate 100MG capsule. This was the only thing that stopped my cough.
Prednisone works immediately
Your life will turn upside down with Sarcoidosis. I was denoised with Sarcoidosis in 2005 with my lungs. Now it spread to my skin. This disease is no joke so take it seriously. Bug your doctor as often as often as you need to. This is your life so do what can you do to get better. I am 61 so, I am scared of what don't know what is go on in my body.
Do all of you still work? My partner has had it for 4 years and refuses to work and he keeps getting denied for disability. Is this a disease that really affects his ability to work? Before the diagnosis he had a great job with the government.
Jasmine- I was diagnosed with Sarcoidosis last year. Unfortunately, it profoundly affects your ability to work if it is active. It can give you fatigue, arthritis, inability to walk, breath, etc. if he is or was working for the federal government, he should have been given an accommodation. As far as disability, I hear that Sarcoidosis is not recognized per se because it is rare and most Sarcoid patients have to get disability though other diagnoses such as rheumatoid arthritis, which is recognized under ADA. The one bad thing about this disease I was told by other patients was, ‘Be prepared to be told that you do not ‘look’ sick.’ Yeah I get that a lot while not being able to walk or wanting to vomit before having to teach a class. Working is very, very difficult. And, most people don’t understand because the illness does not always have visible manifestations. Good luck!
It affected my brother terribly. He ended up getting approved for disability. Unfortunately he passed away a few months ago at 34. He would have been 35 on 9/12/23. He had a really bad case of it and it damaged his lungs so so bad. 😞 it's been hard to cope with as it was a sudden loss. It affected multiple organs too .. including his heart 💜😢
I had to retire due to my sarcoidosis which has resulted in fatigue and brain fog.
My bf still works but works from home a lot
It's all in your head - this is why I don't respect most of the so called "health care providers"
Chitrak Haritaki OF PLANET AYURVEDA IS EFFECTIVE TO TREAT Sarcoidosis
Thank you for sharing this useful information!
I'm disgusted that no one really HELPED you for that long. They HAD your diagnosis. I'm willing to bet there's so much more they could have done (there's steroids and immunosuppresant meds that help).