Sarcoidosis: What does this mean for me?

After a horrific battery of tests, I’ve been tentatively diagnoses with sarcoidosis.

I have as granuloma on my macula, and I am wondering what this might mean for my future livelihood.

I do realize that sarcoidosis can spontaneously remit, but that it might also prove to be a fatal illness.

I’m a bit worried.

ETA: it’s too hard to proof-read. sorry.

seriously. what does this mean for me?

Here is some information about sarcoidosis

But I don’t know how any of us can tell you what this means. What did your doctor say it means? He or she is your best resource for information. Good luck to you.

YMMV, but my father was diagnosed with sarcoidosis shortly after returning from Vietnam (when we were fighting there - not on vacation). At the time, the doctor’s advice to him was to get as much life insurance as possible to prepare mom financially to raise sis and I alone, as he’d likely be dead in ten years. 35 years later, and he’s never had a problem. Note though, that his sarcoidosis manifested itself in the lungs, not the eye, skin, or anywhere else. And it doesn’t seem to have proliferated at all.

I’m sorry you’ve got a medical problem, but I expect that asking your doctor for more information is by far the wisest course.

If you want an anecdote, a friend of mine has had both sarcoidosis and Marfan’s Syndrome for decades. In his case, it has only affected his lifestyle slightly.

This is anecdotal, of course, but I was diagnosed with sarcoidosis in 1993. It did spontaneously remit with no treatment whatsoever.

It was a scary time. I understand what you are going through.

This is not what you are asking, but I recommend you consider the point raised by GiantRat. This is the time to buy life insurance, before you are actually diagnosed with this and this becomes part of your medical record. You can ponder the morality of it later and stop paying the premiums if it bothers you too much.

Sorry I didn’t get to this thread sooner. I’ve had a ton of medical issues in the past several months, both psychological (trauma-related) and physical. Losing my vision the other day, and being sent to a regional eye center has really frightened me.

My problem is that I went to see an eye specialist. I don’t have 100% proof (sorry for that) that I actually have sarcoidosis. It COULD be TB; (I did a stint at a fast-food restaurant a few months ago for extra cash, which resulted in a lot of hand injuries. I have 6 aquariums and one is infested with TB, so i could have gotten infected. Going to the health department today for a scratch test.) He is very tight-lipped about the implications of sarcoidosis, because it is not his area of specialty. He has suggested that since he cannot biopsy my macula, it will take a much more expensive series of tests and a lot of extra work to make a definitive diagnosis.

I wasn’t worried about possible sarcoidosis until I found out that it can be fatal. Having a different illness that can likely result in death, I think I panicked a bit and hastily created this thread.

I DO thank you guys, very much. This is a very valuable lesson for me, regardless of the outcome.

My husband is a trucker - he needs accidental death and dismemberment insurance.
I have no will, yet our home is in the name of my 79 year old mother and myself. I need a will and mortgage insurance.
Neither my husband, my mother, nor myself have life insurance. We should do something about that. (I seriously doubt I can get life insurance due to a certain health condition that I currently have.)

My husband and I are both 26 years old, and we’ve counted on our youth far too much.

So, I know the answer to my question.

Sarcoidosis means that my family should make plans to survive the demise of anyone in the family. And we should make plans to aquire medical insurance no matter what the cost.

My research into sarcoidosis shows that there is very little I can anticipate as far as this particular disease is concerned.

Thank you all, again.