I was very sorry to hear that Bernie Mac passed away. There are many falsehoods and rumors going around. The "lung problems" he had been suffering from for several years was sarcoidosis. The press is stating he died from complications of pneumonia which I am not sure if that is entirely correct. From my understanding he was in a bit of denial about his sarcoidosis which I do not understand why. Some of the news reports are saying that sarcoidosis is a virus, which there is absolutely NO evidence to support that. The truth is they do no know what causes it but it is NOT contagious.
There needs to be more research and education about this disease. The sarcoid community thought that after Reggie White died a few years back from cardiac sarcoidosis that the disease would get more recognition, unfortunately that didn't happen.
This is the official sarcoidosis web site if you would like to take a moment to educate yourself a little about it. You can support research for this disease by buying the bracelets, every little bit helps.
http://www.stopsarcoidosis.org/
This is the message board that I belong to. It has been very helpful for me to talk with others going through similar problems that I am. If you really want to see what a day in the life is like when you have sarc, read through some of the posts.
http://www.inspire.com/groups/stop-sarcoidosis/discussions/
The above is an email I just sent to my friends and family. Thank you for thinking about me.
The last 4 years or so of my life have been a battle. The "old timers" here know the whole story but for you "newbies" it started with miscarriages than serious health problems that no one could diagnosis. I took some drastic measures this past fall but long story short, the finally figured out that I have what they call chronic, progressive sarcoidosis.
Knowing what I have has made it a little easier. At least people can't say that I am just fat and depressed or crazy, all of which I heard more times than I can remember.
However, as I am trying to adjust me life to living with a chronic illness, I find new struggles. Most days I can remain upbeat but when I go weeks on end feeling like rotting garbage on the side of the road, it gets a bit difficult.
I am now getting monthly infusions of remicade. Its not fda approved for the use in sarc. Actually, there is NO medication fda approved for sarc but they use a lot of the same things they use for people with rheumatoid arthritis, like steroids, placquenil, methotrexate, imuran, etc. The infusions are helping but since they raised my dose, I am getting some really horrible side effects. I was super sick for several days after my last treatment. Than, I got a real nasty migraine and after 4 days I had to go to the ER. With this disease, it just seems to never stop. Its always something. I have difficulty breathing everyday and my chest feels like there is an elephant sitting on it all the time. My hands and feet are chronically swollen and painful. I have headaches all the time, extreme fatigue, ringing in my ears, neuropathy, vision problems, memory issues, the list goes on and on.
I am truly sorry that Bernie Mac passed away but lets hope that it brings this awful disease out in the open, awareness is a good first step.
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Taking it one day at a time.....
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Re: Bernie Mac had sarcoidosis
