Bernie Mac and Sarcoidosis | Arthritis Information

 

The following is an email that I sent to my family and friends today.  I know that many of you here can relate to the lack of knowledge and research into our diseases.

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.  This is the message board that I belong to.  It has been very halpful for me to talk with others going through similiar 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. I looked up his disease and it is strange in its relationship to other auto immune diseases. Pred seems to help most, but Enbrel makes it worse. Since it is an auto immune disease like RA, MS and Lupus perhaps all the research to all the auto immunes will help this sarcoidosis too.

What a shame, so young, so smart and funny.Here's what People magazine had to say (not the most reliable source, but...)

I was saddened by his death too.After 30 years of RA I still am frustrated that the people I love still don't 'get' that I have a chronic disease. I can still walk, drive, and work so they just don't get it. My husband was shocked I could not make the last big tall step out of the pool. But then I was shocked I could not make it into the back of the airport van because there was nothing to grab onto to haul myself up, I had to sit up front and endure the filthy looks of the passenger who had been sitting up front. He thought I was rude. What I was just reading made it sound like he got pneumonia bad b/c of medicine he was taking for sarcoidosis (immune suppresant)The exact causes that led to his death have not really come out, its all speculation at this time.  We do need to give the family privacy and let them grieve. I am glad to see that they are asking for donations to be sent to them for sarcoidosis research.

I wonder what drug he was on?  I guess it will come out in time.  Ninety nine percent of the people I tell that I have sarcoidosis have NO CLUE what it is and like many of you, I don't really LOOK that sick.

They do classify sarcoidosis as an auto immune disease at the moment but even that is in question.  Its just such a mysterious disease.  Fortunately, most people that get it, its a one time thing and doesn't really cause them any symptoms.  Than, there are those like me-the 30% that get the progressive, chronic form. They say that its the 5% of the 30% that actually die from a direct result of the sarcoidosis.

My disease causes some different symptoms than RA but there are also many symptoms that are alike and that's why they thought I had ra for so long.  My heart is really being affected.  My 48 hour heart monitor showed an average heart rate of 95, with more than 100 episodes of it going over 100 and several times it got as high as 160.  This was all during normal activity, no exercise or anything.  There's not much they can do about it.  I tried the beta blockers and they really didn't bring it down any and made my blood pressure too low which in turns makes me even more dizzy and unsteady!
[QUOTE=marian]After 30 years of RA I still am frustrated that the people I love still don't 'get' that I have a chronic disease. I can still walk, drive, and work so they just don't get it. My husband was shocked I could not make the last big tall step out of the pool. But then I was shocked I could not make it into the back of the airport van because there was nothing to grab onto to haul myself up, I had to sit up front and endure the filthy looks of the passenger who had been sitting up front. He thought I was rude.
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