Severe pulmonary sarcoidosis ...can anyone explain it?

Hey, So my 16 yr old brother died from this disease about a month and a half ago. His heart just failed..it was like he fainted and then he died. The doctors just told us the cause of death today and I can't really figure out what it means...I know hes in heaven and its all good..but i'ld really like to be able to understand how he died and if it can be hereditary

Im very sorry. Im 26 female. In regression from sarcoidosis. I was lucky. I did not know it was deadly. It was not heriditary in my case and the doctors said it was not common in white females. I had taken Prednizon for awhile. The side effects were awlful. Suprisingly I stop the prednizone and a x ray confirmed no signs of the sarcoidosis. If you need someone to talk to about this email me.

CW,

I'm very sorry for you and for your family.

Sarcoidosis is a disease of inflammation. Unfortunately, no one knows yet how or why it occurs, so we don' t know if it is hereditary. From what we've seen of its occurance, however, it does not seem so, but so far, there's no guarantee about that..

Where some families seem to be susceptible to leprosy, say, that does not seem to be the case with any type of sarcoidosis. Families have occasionally been known to have more than one member catch it, that happens very rarely.

While it occurs normally in the lung, it can appear in other organs, too. It's called ":sarcoidosis" because one of its discoverers connected two Greek words, "Sarx" ("flesh") and "oisis" ("like") because the disease causes flesh-like bumps and globules to form in the affected organ. In the lung these clog the airways and stiffen the lung, reducing its function.

The problem with pumonary sarcoidosis is that it often doesn't show symptoms until late in the disease, and the symptoms vary from one person to the next, even looking like the flu in some people. But while some recover and some don't (it is a very frustrating disease to try to figure out), it just hurts and damages the lung until, in some people like your brother, the lung simply fails. The same thing can happen in other organs as well. Sadly, there's very little, usually nothing, that we can do about it. We can administer steroids to keep down the inflammation until the disease goes away, but that's about it.

I'm very sorry for you and your loss.

As aforementioned, sarcoidosis is an inflammatory disease.

It CAN be genetic, so it would be in your interest to get checked periodically.

Generally, little lumps of tissue or tumors are found in the body, I would say most commonly in the lungs. Perhaps this happened in his heart. One other place includes in the nose.

Sorry for your loss. Stay informed and healthy.

I am very sorry to here of your loss, 16yrs old is way too young to be taken away.

As mentioned in other answers Sarcoidosis is a desease of inflamation it can affect virtually every part & organ of the body. I have suffered with it knowingly since 2000, although I think I've had it for over 20 years. It can affect people in many different ways and at different levels. There are many websites that may be able to help you understand Sarcoidosis although I would put many hours aside to take it all in. www.sarcinfo.com is one such site and www.marshallprotocol.com is another which I have visited many times in the hope I may find a cure. Most doctors & specialists will administer steroids as pretty much the only medication that can help, although on a temporary basis. It in no way can make a sufferer better. Plus steroids themselves have side effects which must be avoided. To date there does not seem to be a clear solution to ridding sufferers of Sarcoidosis. Many people seem to think it will go away or burn itself out, although I am yet to meet or speak to such a person. I myself have limited lung function, skin legions, cronic fatigue and ever decreasing eye sight due to iritis & maculae detachment. My doctors & specialists constantly tell me I'm OK and tests prove I should be OK. It is a desease that to some people does not give outward signs and all sufferers will have "good days" but these days are usually the only days other people see you therefore they think there is nothing wrong. I have heard nothing over the years I have been diagnosed to imply it is hereditary so I wouldn't worry. On the other hand by the time this desease has been diagnosed a person will almost certainly have been suffering in some way for a long time previously. In other words you don't just wake up one day feeling unwell, it creeps up on you. Symptoms are many but doctors usually test for other things as Sarcoidosis is extremely rare.

Again I am very sorry to here of your sad loss and hope things improve for you and your family very soon.