Famous People With Sarcoidosis

1. Reggie White (RIP)
2. Bernie Mac (RIP)
3. Karen Duffy
4. Tisha Campbell

Can anyone think of any more? I wish they would call it Reggie Whites Disease like ALS is Lou Gerighs, somehow the disease gets little or no public attention.

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here is a link to a list with many individuals on it for reference,


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Crown Prince Willem Alexander of the Netherlands

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There is also speculation that William Shakespeare may have had sarcoidosis


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Really? How old is he? Was the prince officially diagnosed?

If so, maybe he can carry the sarc banner and do something good for himself and all of us... increase awareness... get more funding from donations (not all has to come from the government!)...

What else do Crown Princes have to do nowadays???
Here's something for him to do...
You, my dear friend, should let him know that this is his mission!

But if he is already involved in such activities - that's wonderful!

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Yes, officially diagnosed and treated with prednisone back in the 90's. He's never made a secret of it but also never advertised it. I expect having an incurable disease is not the best thing to put on your resumé for king.

I don't think he'd listen to anything I'd have to say. His mother and I have been on the outs since 1997. The 'toetholla' didn't even have the courtesy to RSVP on my wedding invitation ! No class . . . .

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basketball legend Bill Russell and his daughter Karen Russell

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Did anyone add the hockey player Gaetano Gates Orlando? He just had an artificial heart implanted until a donor can be found.

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Someone said Daisey Fuentes but i can not find it.

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I wonder if Reggie White's family would appreciate having a disease named after him.

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chaplainstevens did you really forget the great Mahalia Jackson. Her fatigue, weight gain, and large fibroid and other enlargements came from sarcoidosis. Beautiful voice and heart.

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There is a list on Facebook that includes singer Angie Stone, Evander Holyfield & Floyd Mayweather Sr.

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What do Floyd Mayweather Sr., Tisha Campbell-Martin, Evander Holyfield, Bill Russell and Angie Stone have in common? They are all victims of Sarcoidosis.

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Hello ChaplainStevens,

It's always interesting to gather names of famous people who are like us, whether because they have what we have (good or not so good) or do what we do (hopefully good!). So thank you for this post!

I sincerely hope that I'm not out of line with the following comments. I intend it to be positive and not to criticize.

As some of you now, I'm somewhat of a linguist and I'm sensitive to words. I believe that words really count. Words can make us and others feel good or bad about ourselves and others. Positive words elevate us, and negative words diminish us. Which is what brings me to the word "victim".

Regarding sarcoidosis or anything else that's I would not chose to have, if I had a choice, I prefer not to use the term "victim", unless the person who had sarcoidosis passed away directly as a result of the disease, and even then... I much prefer the term Person with Sarcoidosis - it's a neutral, factual term and it doesn't have the negative emotional connotation of being a victim... or just "XYZ has/had sarcoidosis".

I have sarcoidosis and diabetes, but I never think of myself as a victim. It's not a term I would associate with myself.
To me, a victim is a person who suffers because of a crime or a grave offense committed against him/her by another person.

I know that some use this term also for other situations, say "victims of a hurricane" or "victims of a fire" and I accept this, but I don't use this term for myself of others because it diminishes me/them.

It happens so that, for an unknown reason, I have sarcoidosis. I'm focusing my positive energy to manage my health situation and my life in the best way that is possible for me. I feel that seeing myself as a victim would diminish my ability to have the best life I can have.

Thank you for your attention and for considering what I wrote. I hope this is not annoying or upsetting in any way. If it is, please let me know and I'll remove this post.

Wishing you all the best.

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Since you brought it up:

I find it offensive when diseases are named for famous individuals for a number of reasons:

1) famous people are no different than the average Joe
2) the last thing I would want to be remembered for is having sarcoidosis
3) celebrities are not recognized around the world (no one knows who Lou Gehrig is here. We do know what ALS is.)
4) celebrities are forgotten as time goes by and the connection is lost (how many Americans know who Lou Gehrig is anymore?)
5) did I mention celebrities are no more special than anyone else.

I much prefer that an illness be named for the scientist who identifies it as is the case with sarcoidosis. It is also known as Besnier-Boeck's disease.

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The reason famous people are a help to the cause is because of the notoriety that brings in MORE research funds. Until famous people started getting AIDS the money for research was not that great, Are famous people BETTER than us NO of course not, but their fame draws attention to OUR cause!

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Sad but true. The reality is we don't really know who else "famous" has it. If you had a job that paid millions to healthy people wether it be a singer, actor,dancer, athlete etc... would you announce to the world that you had an incurable disease, with a name that sounds like the scourge. I think I might self preserve and keep my mouth shut. The diseases that some of the "famous" people have, there is an outward appearance of being sick i.e. Michael J. Fox, Annette Funicello, more recently Steve Jobs and Robin Gibbs. They had no choice but to be outed. I think everyone has the choice and right to reveal for the cause or not reveal for the cause. Maybe as time goes on and more research and a possible cure is found, we may hear about some "famous " people that have struggled for years. Seems a little sick in the head to wish for it, but somedays I'm just twisted.

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I agree about celebrity disease names; besides I have KDD: Karen Duffy's Disease. (Or she has TSD: named for ME.)

We all experience SSS: SarcoidSucksSyndrome.

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Yes, celebrities can bring awareness to a disease but it would be emminently more preferable if they did it while they were alive and there is no need to name a disease for them.

As far as I know, no one is calling Parkinson's "Michael J. Fox disease" and yet Michael has done an enormous amount of work drawing attention to this disease, raising funds, lobbying for research, etc.

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LOL, SSS, I'll have to remember that one !

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Not exactly "famous", but the head coach of the NCAA Minnesota Gopher Hockey Team, Don Lucia, has neuro sarc. He missed several games a number of years ago and there was much speculation in the media around what was going on. He has been open to discussing the disease with the local media. http://www.startribune.com/sports/gophers/112104314.html

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Sarcoidosis and the Body
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.

You can learn about the ways in which sarcoidosis affects the body in FSR's Sarcoidosis and the Body brochure.

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