Sarcoidosis: But You Don't Look Sick

[@southstarentdjchaos]

I HAVE BEEN FIGHTING THIS SINCE 03 AND IT IS A HARD FIGHT BUT IM NOT GONNA GIVE UP I HAVE LOST EVERYTHING SINCE I CANT WORK ANY MORE AND PRAYING THAT I GET MY DISABILITY SO I CAN STOP DEPENDING ON MY FAM TO TAKE CARE OF ME .. GOD BLESS THE PPL FIGHTING THIS I KNOW WHAT YOUR GOING THRUGH!!!

[@calvingreen2535]

my favorite app is you don't look sick I was diagnosed with sarcoidosis in 1996 6'2 215pounds currently taking Meds regular doc visits we all have in common the joint and muscle pains and fatigue tired all the time and sharing our bodies with the trickster disease sarcoidosis take it one day at a time my sarciodosis brothers and sisters to the people that don't have what we have never judge a book by its cover

[@JBPerry]

My Wife has Sarcoid, and I am thankful she is getting the treatments and care she needs. Also I am thankful for folks like you who are helping to bring this horrible mess into the light for many who simply don't get it.. Happy Thanksgiving.

[@lisapanek9217]

Thank you for this! I was diagnosed in 2003, but reading this makes me question how so many other symptoms I've been telling my doctors about are probably my sarcoidosis! I'm waiting to hear back from my cardiologist for results of my latest echocardiogram to see if I have cardiac sarcoid now.

[@Kaytecando]

What upsets me the most is my doctors blew it off as "you picked up some kind of skin fungus" and "you just have eczema" and "you have COPD, probably from second-hand smoke". I diagnosed myself myself after coming across a health quiz from AARP and I was the one who told the doctors what I had been suffering from, unknowingly, for five long years. But it is okay because I am receiving the proper care now and it doesn't do any good to remain angry.

[@TeileenLiggins]

+Karen Kirkpatrick (KayteCanDo) That is great you are receiving proper care! Yes, we do have to be strong advocates for our own health's sake. How are you doing today?

[@catalinhitman4556]

here's a few things for ways to treat sarcoidosis Consider changing your Diet - In some cases sarcoidosis has been associated with celiac disease, such as a reaction to certain protein chains commonly referred to as glutens found in cereal grains such as wheat. You could also try different Natural supplements, herbs, and vitamins Also the use of anti-oxidants and natural anti-inflammatory supplements could be of benefit. (I read these and why they work on Remission Crusher Tactic site )

[@mbd6054]

@@catalinhitman4556 Catalin, having had sarcoidosis for thirty eight years, and having tried every supplement, diet change, and lifestyle improvement ever suggested, I can say, that unfortunately, for me, at least, not one single thing has altered or improved my disease.

[@SKULDRAGER]

I was diagnosed in 2007. For years I suffered not knowing what was wrong. I have it in my lungs, stomach, joints and muscles, eyes, liver, and spleen. Some doctors don't have a clue on how to treat this monster. You must have a strong support system with this aswell as humble yourself before THE LORD in order to battle this. The meds alone give dramatic side effects i.e. mood swings and weakness. But what hurts the most is when people see you and they tell you that you don't look sick.

[@nancyvicbelieveinmaine381]

So very true! Prayers for you Dear.

[@Always25_30]

Amen. How is the sarcoid coming?

[@Fionaandshayla]

Stunning video, heartbreakingly sad, such beautiful people!

[@Kevsgirl234]

Diagnosed in 2003 lost my Brother at the age of 35 to sarcoid. I am 36 and have it in my joints, eyes, lungs and they just found it in my heart. Told often that I don't look sick. Thanks for the video

[@13lola13lola]

STRESS is the #1 leading cause of it... the more you stress,.. the harder it will hit you! depression as well... its all connected somehow. more research needs to be done relating stress with sarcoidosis!

[@tanywags]

April is Sarcoidosis Awareness month. In 2006. I was a single mother, full time student, Insurance Underwriter who did volunteer work as often as possible. Now I struggle to get out of bed each day and rarely get out with the public for fear of catching pneumonia. I take cancer meds to slow damage. It only took me 1 year to move from stage 1 ~ 2. Yes we do take every moment for precious, but the physical pain is overwhelming. Please do what you can to work for awareness and a cure.

[@ecveteran1975]

I've heard this so much!!! You can't always see a illness to have one!!! I've had this illness at least since 2010. That's when they caught it. Lungs, lymph nodes, skin and gastrointestinal. You would never know unless you asked me.

[@TeileenLiggins]

+Earl Chaffier Yes, this is a crazy disease because of all the unknowns about it and because you can walk around looking pretty normal most of the time, but feeling crappy. I was diagnosed in 2000 with sarcoidosis but am totally cured now. Let me know if you're interested in hearing how I overcame it.

[@madelinemendoza55]

How did you overcome it?

[@mbd6054]

@@TeileenLiggins Terri, which form of the disease did you have, the short term, or chronic form?

[@black88965]

beautiful video I also struggle with Sarcoid. I have cardio sarcoid and some days are good some are bad. Believe and trust in God everyone. I know your pain. Trust God.

[@tpw9099]

I agree it’s the only way to be healed! God is so good

[@ronchappell8885]

Great video of what we go through on a daily basis. A must see by all

[@ricardolesscar1309]

here's several tips for treating sarcoidosis naturally Consider changing your Diet - In some cases sarcoidosis has been associated with celiac disease, such as a reaction to certain protein chains commonly referred to as glutens found in cereal grains such as wheat. You could also take different Natural supplements, herbs, and vitamins Also the use of anti-oxidants and natural anti-inflammatory supplements could be of benefit. (I read these and the reasons they work on Remission Crusher Tactic site )

[@sillytubeify]

It's hard to prove that you hurt. I had 3&1/2 liters of fluid removed from rt lung along with tissue after being told they couldn't find anything. Told they didnt know what was wrong when they opened up my left lung in a wedge resection to remove fist size sarcoid from pericardia wall. And told to just to chill while one pushed my eye out of place. I'm lucky n glad to be alive because I insisted something was wrong. I'm not making this pain up.

[@RockBoBsteRMusic]

Yeah i just found out i have it too, my feet are swollen, my knees hurt very badly when bending them, and my wrists are starting to hurt. But if you looked at me while i'm not trying to walk i could understand you wouldn't think anything was wrong with me. And i have been under lots of stress. Just got out of college, can't find any kind of job, besides delivering newspapers. The only way to get through that at night is taking a vicadin. I have $192k school bills, $1,500 a month. STRESSFULL!!!

[@TheYAyaLady]

I've suffered with this for 9yrs. of my life now. I've lost my hair, became a diabetic, almost lost my life 2x. Needless to say Im here still because I'm a fighter and I want everyone to know about Sarcoid. No, I don't look sick except when I feel run down, when I just want to rest. I cannot smell. Have problems with my left eye and sensitive to light, just listen to me weeze when I breathe, Or When my brain was swollen and now when I forget my thoughts. I wear makeup to hide the skin rashes

[@jannlee1825]

I get that i just want to scream this pain is real

[@mbd6054]

Yes. Dealing with the disease is so hard, but dealing with skeptical doctors, and people in general, is an added, and often cruel burden. People understand diseases like lupus to some extent, but have no idea about sarcoidosis. It's very hard on sufferers, who are so used to being disregarded, when very ill. We really have to become tough, and grow very hard shells. Good luck to you, and go ahead and scream!

[@LoveMe391]

My mommy has this to. Its her third time being diagnosed with it in her lifetime.... i cant imagine a life without her i am only 17 i cant make it on my own.

[@TheCambra]

I'm a sarcoidosis patient I suffer everyday it's attacking my whole body. I pray everyday to be healed:(

[@bjv311]

I am 50 now and was diagnosed with sarcoidosis of the lungs 5 years ago. It was after I had pneumonia and my legs and knees swoll that it was diagnosed. I was treated like a hypochondriac by people I worked with, they made those comments of you don't look sick. I had the lymph nodes removed from my lungs on a Thursday and had to return to work on Monday, four days later, because my job does not offer sick time or any disability coverage. I have not followed up w/CT's because of my ins coverage.

[@lajusi2002]

Great Video!! Thank you!!!

[@KarmaCowBoY47]

My name is Kristian. I am 26 and was diagnosed with sarcoidosis in 2010. The condition has now spread into a neurosarkoidosis and my qualty of life is now so low I can no longer ignore it. I am about to begin the steroid treatments and I am pretty scared. These videos are really helping me to understand my condition and even more importantly, knowing that I am not alone in feeling misunderstood and accused. Please write me if you want to talk about sarcoidosis with me. Kristian 26, Denmark

[@cindylee66]

I have done many steroid treatments it is hell coming down but worth.

[@KarmaCowBoY47]

You must find strenght in your family and friends. Their strenght is your strenght, and you must find solace, like I did, in knowing that we are a big family in the world, that will always be there and listen to you. - A new family you didnt have before. I, for one, know what you are going through and am here if you need a chat! Kristian, Denmark

[@mbd6054]

Kristian, I know your post is five years old. I only found it today, but I wanted to say that it moved me greatly. I hope you are well, and surviving this horrible disease. Your post was so humane, and kind, despite your own difficulties, that it made my day.

[@CityLimitzENT]

Ill have to share this cause people dont know what it is Ive had it for 3 years now

[@mc803066]

i agree with you when my life was very stressfull all of a sudden i was diagnosed with sarcoid,

[@germainemontgomery3440]

I don't want to die from this. : (

[@TeileenLiggins]

+ChiTownLioness Peace Love Unity How are you doing today?

[@kmsmorocco5888]

I have been diagnosed with sarcoidosis nearly 3 months now IBut actually i ve been sick for 2 years My doctor explained to me but still I am reading here and ther and trying to get more information and patients so that I could understand better

[@richardjozwiak6037]

Hi Terri, I am glad your sarcoid is cured. God bless! Can you please share some of the info with me and how you have coped with it? I have been diagnosed with cardiac sarcoid and have done a lot of research online. I am very concerned about the outcome. Thank you for your kindness. You can write to my personal email: [e-mail]

[@kevinerose]

@@TeileenLiggins I would like to hear some dietary tips on curing sarcoid

[@noushadnaina1383]

@@TeileenLiggins Hi, we are indians. My 21 years old daughter diagonised sarcoidosis last year. Firstly it affected in lung then skin liver, salivary gland and eyes. She underwent lung surgery due to soft mass lesions and doubt about malicgency. Surgery done it last march 2019. But still post surgery wound not healed. 3 months before tb bacteria found in wound pus and started full course ATT. Now started healing. First 6 months took high dose steroid and tapered and stopped it due to heavy side effect. After that doctor started adalimumab 40 mg per week. Now it is taking trwice per month. But last week again started fever, cough and breathing difficulty. She re started her education since 4 months back, now she is preparing examination. Stress may be the reason for recent issue. As per doctor, he is going to stop adalimumab from next week and going to start rituximab inj. Can you help us.

[@deeandry9253]

@@TeileenLiggins Hello can you ou pls tell me how you was cured...I was just recently diagnosed..thk u

[@marijanadenkovik2654]

There are several suggestions for treating sarcoidosis naturally Consider adjusting your Diet - In some cases sarcoidosis has been associated with celiac disease, such as a reaction to certain protein chains commonly referred to as glutens found in some cereal grains such as wheat. You could also take different Natural supplements, herbs, and vitamins Also the use of anti-oxidants and natural anti-inflammatory supplements could be of benefit. (I learned these and why they work from Remission crusher tactic website )

[@lordisholy1]

Diagnosed for a while i can't remember when but. I'm gonna fight until the end :)

[@Amritpalsingh-mc4kx]

What a great video that is full of information. actually, my friend has suffered from this problem. During this time, He was very upset. Then Someone told him about Planet Ayurveda, he went there and took treatment. Now he is fine. So, if anyone is facing such kind of problem or any other health-related problem. You should go to Planet Ayurveda.

[@sharifalhasan2944]

Pls send your numbers pls pls, this is my contact number online (008801711123291

[@vid2ification]

Is this magic planet far? We haven't gotten to Mars yet...

[@Kiasprite64]

I TOO HAVE SARCOIDOSIS THE HOSPITALS OFFER FINICAL SCREENING..AND WILL COVER YOUR BILLS FREE YOU CAN CALL THE HOSPITAL AND GET INFORMATION FROM SOME ONE THERE ON WHAT YOU NEED TO DO.(THEY ALSO COVER DENTAL.,. THINGS MAY WORK DIFFERENTLY WHERE YOU'RE FROM.,. TAKE CARE AND HAVE A WONDERFUL BLESSED ONE IN WHAT EVER YOU DO.,.

[@victorynilsa]

Excellant video and very well put together! THANK YOU! I too have sarcoidosis and have just recently decided to vlog my life on youtube. The good, bad and the ugly! Anyone who has it please visit my site and let me know what you think.

[@smooothlegs]

Lord JESUS HELP us

[@manojsethi6657]

Amen

[@giselimanara]

:(