Friday, July 3, 2009

LET'S PUT AN END TO IGNORANCE!

DISCLAIMER While on Twitter, I recently received a repeat tweet (RT) link to a very disturbing, inaccurate blog entitled 'My two cents on Michael Jackson and Lupus.' I have chosen to bring Miss Feva's log to your attention, as an example of how far we still have to go in the fight to get SLE understood. Please note, upon reviewing the entire post and all links therein, as well as all Twitter links, I discovered it appears the sole intent of the author was not to provide accurate, helpful information regarding lupus to the masses, but instead, the tone within oddly smells of a retaliatory action upon the lupus 'twitter' she refers to in her blog, whom it seems 'blocked' her tweets. Nevertheless, regardless of how we got here, it is my belief a blog misrepresentative of the truth can be extremely harmful to the positive gains established by the facts, and deserves to be addressed. Hense the purpose for this blog.

Hi Fellow "Lupee's"

Sadly, the majority of the referenced blog, tagged and filed under 2cents, celebrity/celebutard, dumbass, health, illness, in the news, linkage, lupus, social networks, twitter is full of fallacies and misperceptions that must be addressed. Unfortunately, much like many naysayers, the blogger has chosen to ignore the solid facts regarding Michael Jackson's diagnosis presented to date by Dr. Deepok Chopra, a well respected physician, CNN's Anderson Cooper, etc. Instead the blogger, Miss Feva, has chosen to compare MJ's known systemic lupus diagnosis to that of Anna Nichole's known drug use and overdose. Accordingly, upon her own admission, states he may have discoid lupus but, "I find it extremely hard to believe he had systemic lupus." Miss Feva, I hate to point out the obvious, but just because we don't want to believe something, doesn't make it any less true.

The most disconcerting part of this blog? When I came upon the bloggers note, "People believe what they want to believe." Well, yes - that goes for anything - if they're not told the truth! Therefore, as a whole, we must speak the truth together.

Here are the facts vs fiction, according to what is stated in her blog and what has been reported:

1. "The initial autospy report was found to be
inconclusive."
-- As of July 2, 2009, there has been no autopsy report released.
2. "He passed a physical exam required for tour insurance"
--SLE cannot be diagnosed in a 5 hour physical exam or bloodwork
3. "
No legitimate doctor would approve of a lupus patient’s exposure to possible UV rays from stage lighting, nor would they condone the physical exertion of a performance of MJ’s caliber.
--Just because a Dr wouldn't condone or approve of it, doesn't mean it doesn't happen.
4. "Due to liability, no promoter would allow an artist to embark on a rigorous, multi-date tour without doctor's approval."
--It appears, in this case - not only did the promotor allow it for an initial ten dates - he added another forty - for a total of $85mil in ticket sales! And, when asked by CNN if he'd do it again, he resounded, "HELL YES!"
5. "
Also, Michael Jackson’s immediate family hasn’t indicated any lupus involvement and his ex-wife is pretty convinced his death was drug related. But, as Jermaine Jackson stated, the cause of his death is unknown until results of the autopsy are done.
--A 6/25/09 'family statement' to the Associated Press would never divulge Michael Jackson's lupus diagnosis, due to the liability it would create upon their own inheritance.
--A 'My space' blog off of Maria Presley's page is her opinion of drug use, henseforth, supposition.

Quite an interesting dicotomy here. Apparently, the blogger asked for public documentation about Jackson's lupus and, despite receiving proof, wasn't satisfied with the source. According to her blog, she claims she read a People Magazine article by Leslie Messer, whereby Jackson's friend and physican Dr. Deepok Chopra admits to MJ's lupus diagnosis, stating, "Lupus is a chronic autoimmune disease that can damage any part of the body." (Note, this is definitely NOT a reference to discoid lupus.) Consequently, CNN's Anderson Cooper also confirmed and verified the validity of Deepok' statement on international television, by asking Chopra himself. In addition to the People article, the blogger references the Huffington Post article by Bonnie Fuller, wherein Fuller not only shares about Jackson's illness, but spoke to Dr. Michael Lockshin, a rhematolgist, who explained, "Mild lupus sufferers, like Jackson, are actually more at risk for having a fatal heart attack'.

Pardon me Miss Feva, but if that is not the factual truth, what is? Also, was it not your blog that firmly stands upon and suggests Jackson had discoid lupus? Where is your evidence to support this claim?

Admittedly, my spirits became hopeful when I read these words: "...misinformation about lupus is rampant and creates road blocks for a general awareness of the disease. I wish people would use more caution before speading around information like this." A tiny suggestion Miss Feva? Perhaps it might be wise to take your words to heart.

Moreover, the claim that, "...some lupus patients have a desperate need for a huge celebrity to be plagued with lupus in order to have some sort of spokesperson or validation..." seems rather cruel and coldhearted. Most certainly, the timing of such statement, feels hurtful beyond measure to all systemic lupus sufferers, including Michael Jackson himself. But for you Ms. Feva to judge and say, "these are the same people that let lupus become their identity...because it's the only thing remotely interesting and unique about their lives" begs me to wonder why, once you've heard the truth - you still deny it -- insisting on this insideous, angry, malicious blog of untruths.

In closing, forgive me while I digress, but was it not your blog that said, "I don't know what I hate more-shotty journalists or the people that believe everything that they read on the internet?"

Perhaps we need a refund on your two cents


It is abundantly clear that this blog is not only a misrepresentation of the true and current facts in this case, but is also thoroughly full of outdated, incorrect information. I can only speak for myself, BUT, let me be clear, Miss Feva, just by its existance alone, you do every lupus sufferer among us a disservice when you chose to stick with anything other than the known facts.


http://nevafeva.com/blog/?p=1580

neva, miss feva, blogging

all game, no plot

My Two Cents on MJ and Lupus

Just like with Anna Nicole, there are rumors going around that Michael Jackson died from lupus. While it is possible that he suffered from discoid lupus (which affects the only the skin), I find it extremely hard to believe he had systemic lupus.

For starters, the initial autopsy report was found to be inconclusive and he had passed a physical exam required for tour insurance. No legitimate doctor would approve of a lupus patient’s exposure to possible UV rays from stage lighting, nor would they condone the physical exertion of a performance of MJ’s caliber. Therefore, due to liability, no promoter would allow an artist to embark on a rigorous, multi-date tour without a doctor’s approval.

Also, Michael Jackson’s immediate family hasn’t indicated any lupus involvement and his ex-wife is pretty convinced his death was drug related. But, as Jermaine Jackson stated, the cause of his death is unknown until results of the autopsy are done.

I could go on and no, but I won’t.

I have been having a bitch-fest with some dipshit on Twitter who felt the need to ‘educate’ me on the subject by sending me links to the Huffington Post and People.com. (I asked her to provide some sort of official public document, but that was the best she could do). I don’t know who I hate more–shotty journalists or the people that actually believe everything they read on the internet. Misinformation about lupus is rampant and creates road blocks for a general awareness of the disease. I wish people would use more caution before spreading around information like this.

But, sadly, people believe what they want to believe. Some lupus patients have a desperate need for a huge celebrity to be plagued with lupus in order to have some sort of spokesperson or validation. These are the same people that have let lupus become their identity, probably because it’s only thing remotely interesting and unique about their lives. I feel sorry for these people and I hope I never let systemic lupus–or any other illness and/or physical imperfection–define me as a person.

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1 comment:

  1. Kudos, nice way to approach subject matter.

    ReplyDelete