hello fellow Lupine

shadrat · Posted: Tue Nov 08, 2005 9:43 pm Post subject: hello fellow Lupine

Hello, Just a short introduction... my name is "shadrat", a name chosen only because my cat's name is Shadow. I am so grateful to have found this forum, for there are no local Lupus support groups. I was FINALLY diagnosed in August, though I have lived with many of the symptoms of Lupus for about 8 to 10 years. I began researching the disease and found only a scant group of celebrities who have come forward saying they have the disease, one of which is Michael Jackson, whom I will happily admit that I think is a total freak... but knowing he has Lupus too, it has provided me and others a good laugh when Lupus comes up in conversation... so, allow me to introduce myself in that way, "Oh Great! Now I have something else in common with that freak! Not only are we both 46 year old White Females that enjoy the company of younger males, but we also share Lupus in common! #evil

Anyway, that's who I am. I've posted the specifics on how I learned of my illness under the newly diagnosed forum index. Nice to meet you all.

TracyDawn · Posted: Wed Nov 09, 2005 4:43 am Post subject:

ROFL Love your description, although I have to admit I never knew Michael Jackson had Lupus. I don't like him either, but it would explain SOME of his behavior. Like the trips to the hospital for pain, etc. It could even explain his skin too. I met a lady a long time ago before I ever even knew what Lupus was, that had it pretty bad and she was an african american but was as white as I was. The disease had really attacked her skin and she had to wrap up from head to toe to walk out the door.
ANYWAY, welcome aboard. Smile

jothebrit · Posted: Wed Nov 09, 2005 8:31 am Post subject:

loved the Michael Jackson story, that would explain some of it.
Thanks for the laugh and welcome.
Jo

Saysusie · Posted: Wed Nov 09, 2005 10:29 am Post subject:

The "Lupus" diagnosis for Michael Jackson was also news to me. He claims that his skin color change was due to Vitiligo - Hmmmm
I have known people who suffer from Lupus who also suffer from dermatomyositis which can, in some patients, cause loss of pigmentation. Perhaps he suffers from all of the above!!

Saysusie

SoleSinger · Posted: Wed Nov 09, 2005 10:33 am Post subject:

But, if Michael Jackson has Lupus, how come there aren't A MILLION Lupus benefit concerts? Why isn't there a Michael Jackson foundation? Why isn't more research being done since this HUGE star has it? Or why isn't he donating HIS bazillions to the cause???
_________________
"All sounds are potentially dangerous.
All sounds are potentially medicinal.
All sounds are beautiful." ~Yoko Ono

hatlady · Posted: Wed Nov 09, 2005 3:36 pm Post subject:

Shadrat, welcome! You've found your support group - we're all in this together and we're all over the world! It is so wonderful to get support, information and laughter here -- SaySusie has done wonders creating this forum.

Thanks for the laughs! Laughing

laughter is truly the best medicine.

I didn't know about Michael Jackson either and... Solesinger, um.... puh-LEEZ! Rolling Eyes

Would you really WANT him as a spokesperson? I think if he was acting as spokesperson, I'd say I had something else..... Twisted Evil

SoleSinger · Posted: Wed Nov 09, 2005 4:45 pm Post subject:

Does it really matter if we're getting the research support that we deserve????

Besides.... (And I'm gonna get a LOT of "boo" 's for this) I like him... But, I like Yoko Ono, too... I'm a freak! I have accepted that and moved on! LOL!!!
_________________
"All sounds are potentially dangerous.
All sounds are potentially medicinal.
All sounds are beautiful." ~Yoko Ono

shadrat · Posted: Wed Nov 09, 2005 6:40 pm Post subject:

Soul singer, I understand your point about getting the research support we need and deserve, but no one takes anyone from the Jackson Family seriously anymore. People would figure it is just another way to draw attention to himself. Seal, another Lupine, on the other hand, would make a great spokesman for Lupus... he's highly respected in the entertainment field, and married to one of the world's top supermodels.

But by whatever means, Lupus definately needs to have a handful or more of highly respected well known people pushing for research funding. Look what Christopher Reeve did for spinal cord injuries, Michael J Fox and Mohammad Ali for Parkinson's Disease. etc. I know as large a field as the entertainment/sports field that surely there is SOMEONE out there who is not ashamed or afraid to lend their voice to support Lupus.

Incidentally, I'm newly diagnosed, yet I submitted a letter to the editor of our daily newspaper last month during Lupus Awareness month in effort to get more people to seek medical attention and to make them aware that they have the right to demand blood tests that can point them in the right direction should their bloodwork show some type of autoimmune disease. Rarely do doctors test for that unless it is a case of the flare being severe enough to make them question a diagnosis.

SoleSinger · Posted: Wed Nov 09, 2005 7:15 pm Post subject:

Seal has Lupus too?

So, what the...??? Melissa Etheridge gets breast cancer, Michael J Fox has Parkinson's, Richard Pryor has MS... I just figured that there wasn't anyone in "The Biz" that had it... But, since there is, don't you think that more attention should be brought to the matter? Isn't this how society WORKS nowadays (unfortunately)???

I just don't get it I guess...
_________________
"All sounds are potentially dangerous.
All sounds are potentially medicinal.
All sounds are beautiful." ~Yoko Ono

shadrat · Posted: Thu Nov 10, 2005 10:01 am Post subject: seal and Lupus

The scars on Seal's face is from the discoid rash. I THINK I read where one of the Williams sisters that play tennis (Venus and Serena) either has it or another family member of theirs does, but don't quote me on that. I do know that news reporter Charles Karault died from complications from Lupus, but what little research I've done yields me little, if any information on which celebrities may have it.

mommymc · Posted: Thu Nov 10, 2005 7:32 pm Post subject:

Wow, I didn't know about Michael Jackson or Seal, but I did hear that James Gardner's daughter has lupus.

Saysusie · Posted: Tue Nov 22, 2005 3:08 pm Post subject:

Well, I hate to be the person to say this..but maybe the fact that Lupus does not get a lot of attention, support or research is because it has something to do with the fact that Lupus mostly affects people who are considered minorities (women, African-Americans, Asians, etc.).
I don't know, but I wouldn't be surprised if that played a big part in the reason why.

Saysusie

Colleens · Posted: Wed Nov 23, 2005 1:00 pm Post subject:

this is what i found from a google...

My own disability, Lupus, has an honor roll all its own. We include the
writers Jack London and Flannery O'Connor. Our entertainers include Mary
McDonough, who played "Mary Ellen" on "The Waltons," and Seal, the musician.
Charles Kuralt was one of us, too.

We Lupoids have even reached all the way into the White House. Millie Bush
the dog, had a form of Lupus, too. We're even interspecies.

We have a Junior varsity team that includes Tia Robertson, daughter of the
basketball great, Oscar Robertson; Mrs. Lester Maddox, the former First Lady
of Georgia; and Lydium Emerson, Ralph Waldo's second wife.

We also have a few "unnamed ensigns" in our fold. There is the most recent
ex-wife of Richard Dreyfuss; Ellen DeGeneris' sister; and Ted Turner's sister

Michael Jackson does not have Lupus, but Vitiligo.
_________________
Dx this year SLE but because of past symptoms and testing I think I've had it 15 years!Dx 1990 Fibromyalgia, depression, OA, migraines, plantar fasciitis, tarsal tunnel synd. both feet.Heart surg '97 for bicuspid aortic valve w/regurg. hi cholestrol.

Colleens · Posted: Wed Nov 23, 2005 1:07 pm Post subject:

found this too...howie dorough from Backstreet Boys...his sister died from lupus

http://www.doroughlupusfoundation.org/about.html
_________________
Dx this year SLE but because of past symptoms and testing I think I've had it 15 years!Dx 1990 Fibromyalgia, depression, OA, migraines, plantar fasciitis, tarsal tunnel synd. both feet.Heart surg '97 for bicuspid aortic valve w/regurg. hi cholestrol.