Sarcoidosis Stories: Rick's Story
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- Опубліковано 16 жов 2024
- The CHEST Foundation of the American College of Chest Physicians and the Foundation for Sarcoidosis Research have teamed up to launch Sarcoidosis: Seek Answers. Inspire Results. - a campaign that encourages people living with sarcoidosis to take a proactive role in their treatment plan.
Sarcoidosis is an inflammatory disease wherein the immune system goes into overdrive, causing cells to group together into clumps called granulomas. While more than 90 percent of cases affect the lungs and lymph nodes, sarcoidosis can affect any organ and interfere with the organ’s function.
Because each sarcoidosis case is unique, it’s important to ask questions and follow a tailored treatment plan. If you are living with or caring for a loved one with sarcoidosis, we encourage you to download and discuss the following resources with your health-care team.
Visit chestnet.org/sarcoid to learn more.
Also think asthma was wrong diagnosis 13 years ago. Had chest xrays at least twice a year since 2020. Diagnosed with Interstitial lung disease in Sept 2022, and confirmed sarcio stage 4 pulmonary fibrosis Jan 2023 after lung biopsy. Had to change jobs as I was coughing too much when I speak. Now I sometimes can't even shower without oxygen. Have peace with my condition and coping as best I can. But before Christmas I saw close friends from out of town, and when my oxygen level dropped they were so worried. Just HATE what this is doing, not to myself, but to my loved one's when seeing the worry in their eyes. Only God's strength keeps me going.
I will say I never let them take a lymph node from my lung but I had hilar lymphanopathy. After vitamin therapy, doxycycline and flucanozole and the covid shot my symptoms went away. Be aware that most anemia can cause non casseating granulomas. Many others on the sarcoidosis channel have genetic mutations that do not allow them to absorb folate for B12 or absorb b12. Vitamins can encourage absorbtion. Another needed vitamin is B1 and calcium if one is low.
Do you have Factor V Leiden or sickle cell anemia? I was diagnosed with sarcoidosis in 2019. Both my parents and I are all heterozygous for factor v leiden. Factor V Leiden or FVL can cause clots and CEPH in the lungs, blood clots anywhere. It is a dominant mutant blood condition.
But factor 5 mutation increases risk of sarcoidosis is a chronic granulomatous disease, so huge difference to correlate these 2
Im 60 years old first got sarcoidosis at 24 years of age i took early retirement at age 50 because ive now got lung fibrosis and pulmonary hypertension the Dr's here in the UK play this illness down thats why mine became progressive my resting oxygen sit at 93 when i move about it drops to 88 sometimes 86 i get no treatment no oxygen and see a consultant once every 6 months when i explain my fatigue and symptoms im told its nothing to do with my chest disease 😅
My mother is also suffering from sarcaidosis from 20 years 😢
#Sarcoidosis patient Rick Passaglia shares his journey - 2nd in a series of #SarcoidosisStories. ua-cam.com/video/NtXUPLucIhM/v-deo.html #CHESTFoundation
How are you doing now? Prayerfully , a viewer🙏🏼🙏🏼🙏🏼🙏🏼
Cut out all fake oils eg corn oil, in fact try an oil detox for 2 weeks and start cycling even a stationary bike sarkies cant move lymph very well and so exercise is vital
belated thank you for very useful comment
My mom died a horrible death from Sarcoidosis.
You are a horrid person for posting that while a guy is sharing his story. Is that what you want people who are suffering to know? You should be ashamed of yourself.
And your a troll😂
@@1jazzyphae you wanna cry about it...
U gotta be the biggest piece of shit!!! I was diagnosed with this a few days ago. If this is true i wish God would of sparred you're mother and took you ..
I'd lost 2 sisters to this sarcoidosis. One of my sisters said prednisone was something that contributed to her demise, she passed away in 1999, since then I've been researching this disease and attending support group.