BLACK FOLKS REALLY DO NEED TO KNOW ABOUT SARCOID. I’VE HAD IT SINCE BIRTH. I AM NOW 47. THERE IS SO MUCH DISCRIMINATION AGAINST PEOPLE WITH THIS DISEASE. IT IS NOT AIDS. AND PEOPLE DO LIVE PRODUCTIVE LIVES WITH THIS DISEASE AND DO MANAGE TO LIVE PAST 50 & BEYOND.

I can not believe that someone would suggest that it is not important for people of any group or groups to have knowledge of
this or any disease. Sarcoidosis is not just a disease that effects Blacks anyone of any race can get Sarcoidosis. It may be more common in black men and white women but anyone can get this disease. This disease attacks people of all races ages and genders. Sarcoidosis is not simply a disease of the lungs it is a very serious debilitating multi organ granuloma disease that is really hard to identify. It is a silent diseases that not only attacks people who feel sick but it attacks people who appear physically normal in every way until deeper investigation is done. Many people with this disease are often misdiagnosed allowing the disease to go unrecognized until there is permanent damage to the lungs, heart, liver, spleen, kidneys, brain, muscles, joints, bones, skin, eyes and nerves that can not be reversed. Once thought to be a short term disease lasting only a few months it is now known that Sarcoidosis is a life long chronic illness with long sporadic remissions. With out any warning it becomes active again attacking the same or a different body organs then originally thought to be involved on its victims. A disease where ones immune system attacks their own bodies organs as foreign. It is often more severe then MS because it’s progression is slow over many years with out being noticed until scarring or the organs damage is irreversible. Many patients with Sarcoidosis end up with organ transplants. Those who do not end up with a transplant often succumb to the immortality due to side effects of this eventually fatal disease. Yes, many people do live normal lives for many years with this disease so it is not considered fatal. But most of its victims eventually succumb to its complications. There is no known cure for this disease and very few people of status have been diagnosed with this disease so it is rarely in the public eye. Karin Duffy did bring Sarcoidosis into the public eye for a short time, but without anyone else who is in the public eye coming forward to tell there stories as well, the topic of Sarcoidosis dissipated. A few years ago one of our presidents was diagnosed with this disease, I wont state which one in the hopes that this alone may spark someones interest and allow themselves to research the topic further. But when researching this disease be careful the internet is full of incorrect and misleading information making Sarcoidosis out to be less danerious then it really is. I suggest in your research you check out people with the disease such at those involved in support groups on line, One good one is on msn called the Sarcoidosis connection. With the president, after the disease went into remission it was dismissed as a misdiagnoses. This however is probably incorrect. Because of its mysterious ways the disease appears and then disappears it is often misdiagnosed as other diseases. When it does finally comes out of its long remissions making its ugly reappearance it is even harder to track because people don’t realize it is Sarcoidosis attacking a new part of their body until it attacks over and over, often for many years that Sarcoid was truly the culprit from the beginning. Diagnosis is often very hard with this disease because there is no one blood test to determine that this is the culprit. Often people are told they have MS, Fybromialgia, Lupus, and other Immune System diseases over and over before being properly diagnosed. Patients are often accused of being depressed and hypochondriacs, because of the frequency of the diseases attacks on so many parts of the body at random. No two people with sarcoid have the same exact symptoms in the same sequence. Noone truley knows what where when or how the disease will attack next. Although many medical journals state stages of Sarcoidosis, this information is incorrect because the disease attacks at random and often bounces back and forth between any of these stages. This makes tracking this disease even more complex.
Public awareness of the frequency if this disease not only in blacks but people of every race and origin is extremely important if we are to ever get the government to give grant monies needed to study this disease further. We also need the scientific communities interest to peek if we are to ever want studies to be done towards a cure for this disease. A lot of scientific study needs to be done on this disease, but funding for rare disease often is not available. Unfortunately this disease is no longer as rare as people once through. Curiosity by the scientific community to relate to a disease that is without public figures to spike interest is rare in itself, therefore study for such is often pushed aside. Over the last 20 years it seems that this disease is becoming more frequent suggesting an environmental link.
With the computer age and a deeper look you can see the frequency of this disease and how much of the population is affected. The public health department needs to start tracking this disease so that the community at large will realize the serious implications of this disease and how much of the public is effected by Sarcoidosis.
Although this diseases lack of recognition and Reggie Whites death in itself is tragic, maybe good can come out of this if people make sure this tragic loss gets into and stays in the public eye.

Hey get up off your sorry arses. Sarcoids is just an auto-immune response. Of course when the doctors say it’s a mild disease I’d like to punch him in the face ’cause it sure slowed me down and hurt like hell. I can’t tell you what causes Sarcoids but I can tell you to analyze your environmental conditions and/or stress levels. If you have a lot of allergies like I do get rid of the allergens. I developed Sarcoidosis after moving into and old house and during heavy renovation I devolped the disease. Needless to say I moved out of that house and started drinking Guiness. The symptoms went away! There’s the cure!

This is all very interesting. My ending up on this site was prompted by the football game that was on tonight remembering and honoring the late Reggie White. I was researching the cause of death when I came across this site. In reading the postings, #6 posted that they had symptoms until they moved out of an environmentally alergen filled house. My daughter was diagnosed with having a general seizure disorder about 1 year after moving into an old house. It has been being treated as epilepsy, however after reading this information and doing additional internet research I am wondering if there could be some link to Sarcoidosis that is being caused by her environment. If anyone has any additional information please post and I will check back. I will be talking with her neurologist this week but I have a feeling that he will poo poo this.