- About Sarcoidosis@Home -
"No matter where Sarcoidosis starts
It's still Sarcoidosis."
In your entire body (systemic) an should be diagnosised as such.. #JS
#sarcoidosis Sarcoidosis period....
- Sarcoidosis Screening -
To hopefully delay (as there's no cure)an or prevent sarcoidosis complications later; inwhich will afford people with sarcoidosis to live longer into there 60's 70's an 80's a more natural life span if you will...
My case in point is i.e the comedian Bernie Mac who passed from complications of sarcoidosis; as well as the singer Levert from heart sarcoidosis complications.
#Sarcoidosis Awareness Initiative for inclusion of yearly physicals to promote early detection of sarcoidosis especially for people of color.
My Initiative is that a sarcoidosis conservation an testing happens with yearly physicals especially for people of color.
It took years to confirm my diagnosis of sarcoidosis....
Even with the confirmation that I had sarcoidosis only in my eye at the time... it still took years for an actual diagnosis of sarcoidosis even when it was crystal clear it was in my eye.
- After me comes you......
Again, "No matter where sarcoidosis starts" too include any of the "3 syndrones of sarcoidosis".... or a combination of ... at the same time an or alternating
1. SARCOIDOSIS ... (you have sarcoidosis) as well as
+ 1 or 2 OF THESE SYNDROMES an possibly at the same time.
Heerfordt syndrome
Lofgren syndrome
Blau syndrome
"No matter where Sarcoidosis starts
It's still Sarcoidosis."
In your entire body an should be diagnosised as Sarcoidosis period.
People of color especially need #Sarcoidosis physicals & work up for early detection Initiative... that sarcoidosis and that the word "Sarcoidosis" be included at every physical an eye exam for people of color.
For people who's heart is bothering them an with the Lung a cough or shortness of breath etc... hence, cardio #Heart and Lung exam with symptoms for people of color in the 🇺🇸 that there be testing for sarcoidosis. Yearly, Heart / Lung MRI or PET scan or CT scan (or every 2-5 yrs based on your status/stage of sarcoidosis) of the heart an Lungs to check for sarcoidosis or any progression included as part of yearly physicals for people of color.
I need to mention for example if someone is told they have a sarcoidosis rash it may not be taken seriously hence, one may not follow up.
I want people to realize ****any time the word Sarcoidosis is mentioned **** in people of color it needs to be taken seriously ***** an follow up care is absolutely needed! (as Sarcoidosis can go on the effect other parts of the body) an not to be dismissed in this example that's its just a rash. I too had sarcoidosis rashes as well as infrequent bulls eye rash/spot that was not Lyme disease way before getting sarcoidosis in my eye. Sarcoidosis is an immune disorder an it is possible to have more then 1 immune disorder at the same time; in my case because of the bulls eye rashes (an 5 negative Lyme disease test over the years) possibly sarcoidosis an lupus.
This is why I recommend a specialist/multiple specialists based on your symptoms ....- when you need a diagnosis....instead of a PCP in some cases ....to diagnosis sarcoidosis. #IJS based on my experience. You will never get a diagnosis if the wrong test are done!
Conversely, people of color.....
Unfortunately looking well with sarcoidosis when going to a PCP hinders some pcp's (Human factors, come into play for some its even what country the doctor is from an there perspective on people of color etc., ....as well as the doctors personal experiences/background or even biases) can play a part in not being taken seriously with potential sarcoidosis...also leading to incorrect testing etc,. cause your not being taken seriously because you look well as a person of color irregardless to your symptoms. #Other Factors to a sarcoidosis diagnosis again, You will never get a diagnosis if the wrong test are done! #IJS appearance of care ...this is primarily the reason a person of color will have multiple PCP changes prior to a sarcoidosis diagnosis. Here's an example... A pcp who doesn't believe you have sarcoidosis (or even lack of experience with sarcoidosis whatever...) #JS example might prescribe a high dose Vitamin D to someone who has sarcoidosis. I absolutely, appreciate an respect all doctor but the human factor is what it is.
I swear I had scarcodosis rashes for constant 7ish years an they stopped; an sarcoidosis then started in my eye constant for another 7ish years all with no actual diagnosis but being treated for sarcoidosis. I need to mention I spent years drinking coffee day an night as well as No-doz while working just to stay away because of the fatigue from sarcoidosis. Most assumed I loved coffee which was not the case; an to this day I still drink coffee to stay awake longer an to get stuff done. The fatigue, is real an ignored by some heck by most....especially again as a person of color because you look well an or speak well or communicate well if you will. Metaphorically, sarcoidosis is alike to the wind ... some can't believe ... address what they can't see with respect to diagnosising sarcoidosis #JS
Lastly.. an however, my point is a person of color has to go thru so many factors....that come into play before an after a sarcoidosis diagnosis; all because most with sarcoidosis look well /at the time of a doctors visit in some cases.
- Here's how to pronounce Sarcoidosis....
⬇️⬇️
https://m.facebook.com/story.php?story_fbid=3415743891982348&id=100006403116700&mibextid=Nif5oz