Famous People with Lupus

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Mussani learns to control Lupus
Salimah Mussani

(CP) - There was a time not so long ago when being able to play golf a couple days in a row was victory enough for Salimah Mussani.
Lupus often left her feeling lethargic as the incurable disease caused joint pain, skin rashes and swelling in her hands - symptoms that were only exacerbated by a profession that saw Mussani constantly travelling and under stress. "I'd have a couple good days and then be totally worn out," she said this week. "It's tough to find any consistency when you feel like that."

Consistency has come in the form of three victories this summer for Mussani, who has been the beneficiary of new medication and a little maturity.
The 26-year-old from Burlington, Ont., started taking the drug Cellcept about two years ago and found herself feeling better. She's also made sure to rest often.
"I've learned to manage myself better," said Mussani. "Even if I don't always think I need a week off, I take a week off. It's so important to re-energize my batteries and look after myself."
Clearly, it's working.

Mussani won the CN Women's Tour event in Barrie, Ont., in May before taking the Michelob Players Championship - the only major on the U.S.-based Futures Tour - a few weeks later.
She topped it off by winning the Canadian Tour event in Ottawa earlier this week. Mussani was so dominant that she missed only three greens over two rounds at Ottawa Hunt and Golf Club and was eight shots better than anyone else.
"It was just very relaxing," Mussani said of her latest win. "I was telling my caddy (fellow Futures Tour player Lisa Fernandes) that the game just feels simple right now."
It's the kind of zone every golfer dreams of.

Mussani hopes it continues as she prepares for two upcoming LPGA events. She'll play the CN Canadian Women's Open in London, Ont., from Aug. 10-13 and the State Farm Classic in Illinois from Aug. 31-Sept. 3.
She's played only one previous LPGA event (the 2003 U.S. Women's Open) and is eager to prove that she can compete with the best.
"It will be a good test for me to see where I stand," Mussani said. "Just having an opportunity to go out there and play with the top players and see what I can do.
"It's where I want to be."
It's been a long time coming.
Mussani was diagnosed with Lupus in 2000 while playing collegiate golf at Stanford.

After turning pro, she struggled as much with her health as her golf game. Mussani routinely had to withdraw from tournaments and even spent the night in a Florida hospital last November before playing in the tour's qualifying tournament.
Her best finish in four seasons on the Futures Tour had been 27th before breaking through this year.
"This girl does not quit," her father Anil Mussani has said. "It's been very difficult with the Lupus. She has the talent, but I think her health has held her back for a long time."

With that under control, few women have been better than Mussani on golf's mini-tours.
She plans on playing all the remaining Futures Tour events except the one held at the same time as the Canadian Open. Mussani is 11th on the money list and would earn an LPGA card for next season if she could get into the top five.
Either way, she's feeling much better about her situation after struggling for so long.
Mussani has earned $10,000 on the Canadian Tour and another $18,794 US on the Futures Tour so far this summer.
"I'm not breaking the bank but at least I can afford to start eating at nicer restaurants than Taco Bell," she said with a laugh.

HometownBurlington, Ontario
Birth Date8/15/1979
BirthplaceOntario, Canada
CollegeStanford University
Turned Professional2002
Joined FUTURES1/14/2003
Career Earnings$22,623
Career Best Finish1st

Two-time winner of the Ontario Junior Championship (1995, 1996).
Two-time winner of the Canadian Junior Championship (1996, 1998).
Winner of the 1997 Texas 5A Championship.
Recorded five top-10 finishes in collegiate competition.
Finished second at the 1999 Big Ten/Big 12 Shootout.
Member of the 2000 NCAA Women's Golf Championship runner-up team while at Stanford University.
Competed in the 2003 U.S. Women's Open Championship.
Recorded one win on West Coast Ladies Golf Tour (2004).

Year Events Best Finish Top 10 Cuts Made Earnings(Rank)Average Score(Rank)

200314T275$1,394  (120)75.76
20048T367$1,895  (109)74.32
200511T374$540  (155)76.54
*2006*81st18$18,794  (11)71.84

Career VictoriesPurseScoreEarnings
2006 Michelob ULTRA Duramed FUTURES Players Championship - Decatur, Ill.$100,000272(-16)$14,000 

2006 Finishes
TournamentDate Score Finish Earnings
Louisiana FUTURES Classic (Lafayette, LA)April 7 - 974-76-72 222T16$1,022 
The Power of a Dream FUTURES Golf Classic (Frisco, TX)April 21 - 2372-67-77 216T28$525 
Jalapeno FUTURES Golf Classic (McAllen, TX)April 28 - 3076-68-72 216T14$1,207 
Tucson Duramed FUTURES Golf Classic (Tucson, AZ)May 12 - 1466-73-69 208T29$462 
Team WLF.org Golf Classic (Saint Anne, IL)June 9 - 1176-73-71 220T21$832 
Michelob ULTRA Duramed FUTURES Players Championship
  (Decatur, IL)June 15 - 1867-70-68-67 2721st$14,000 
Lima Memorial Hospital FUTURES Classic (Lima, OH)June 23 - 2577-68-72 217T67$154 
Horseshoe Casino FUTURES Golf Classic (Hammond, IN)June 30 - July 269-80-76 22529th$592 


Biography~Ted Turner
American entrepreneur, one of the 400 wealthiest persons in the U.S., worth over $6.9 billion and the owner of Turner Broadcasting, CNN, two sports teams and some of MGM, a self-made mogul. Controversial and bombastic, he is known as "Ted the Terrible," "Captain Outrageous" and "Mouth of the South."

Tending to talk first, think later, he is hard-drinking and loves attention. His dad, a driven, demanding man who pushed Turner to do more, committed suicide at age 53. He lost his only sister to lupus in the 1980's.

 A super-patriot and iconoclast, he was raised by his dad to view insecurity as the secret of success. When his dad shot himself to death on 3/05/1963, Turner took over the bankrupt family billboard business. Gradually, he moved into his entrepreneurial position in TV stations and baseball teams.

While a student at Brown University, Turner developed a passion for the classics and immersed himself in Virgil and Homer. He had come to see himself as a kind of latter-day Odysseus who feels that his life will end before its time. His major battles have been against nuclear weapons and for peace, population control and environmental causes.

Approaching sports with the intensity that he puts into all his projects, Turner bought the Atlanta Braves baseball team in 1966 and the following year, the Atlanta Hawks basketball team. An avid ocean racer, he holds four Yachtsman of the Year titles. He organized the Goodwill Games, international athletic competitions that began in 1986 in Moscow. The second games featured more than 2,500 athletes from 40 nations competing in 21 sports, set in Seattle, WA, 1990. As the founder of CNN television, he transmits low-cost sports and entertainment programs via satellite to cable systems across the country.

He was married to Janie Smith Turner for 22 years. A womanizer, he went through several marriages. After his first divorce, from Judy Nye with two kids, he married a second time, to Jane Smith, on 6/02/1964; three kids. A twosome with Jane Fonda in 1990, they married on 12/21/1991 in northern Florida. An unlikely couple, both with strong egos and commitments, they nonetheless were a power-pair and seemed to fit together until 1/04/2000 when they announced their separation, saying that they had reached a juncture "where we must each take some personal time to ourselves."

They had often been pictured on one of Turner's nine massive ranches, including a 107,000-acre ranch in Montana, a 350,000-acre ranch in New Mexico and a 578,000-acre ranch spreading over New Mexico and Colorado. Over the years he and Fonda have vied for the reputation of the one most apt to put their foot in their mouth, she with her anti-Vietnam war protest and he with his public jokes that the Pope should eliminate the commandment against adultery as being out of date. Both are high-energy people, strongly committed to their beliefs. Though Fonda is worth a $670 million aerobics and fitness empire, Turner married to the tune of an iron-clad pre-nuptial contract. His philanthropy includes a donation of one billion dollars to the UN on 9/19/1997.

The talented Kellie Martin lost her younger sister, Heather, to lupus in 1998.
Best friends growing up, the two girls survived their parents' divorce together. Her sister encouraged Kellie in her acting career. Shortly after Heather's sophomore year of college, she got what the doctor thought was the flu. As her sympoms got worse, the doctor gave her medication to which she was allergic and she had convulsions. Thus began the nightmare that ended with her tragic death a short time later.

Realizing it must be more than the flu, Kellie and her mother took Heather to another doctor who diagnosed the lupus and began a course of treatment


The Symptoms of Lupus-
Don't Let Your Doctor Misdiagnose Them

This is a transcript from an interview with Kellie Martin by Diane Sawyer.



Diane Sawyer: We're going to be talking with Kellie Martin from ER this morning. But this is a personal story. It is a medical story about her sister, Heather. Who was dx'd [diagnosed] with lupus too late for help. We don't hear alot about lupus but more than a million Americans have it. It is extremely difficult to dx the first time so we want you to hear what she has to say & also our Medical Editor, Dr. Tim Johnson.


Diane Sawyer:Kellie Martin is here to talk about a great loss in her life. The death of her 19 year old sister, Heather, from lupus. [shows a picture of the 2 of them] Lupus is an autoimmune disease. For unknown reasons it causes the body to attack it's own organs & tissues. It strikes five times more women than it does men & especially those of child bearing age and also African Americans. And over & over again *good* doctors fail to dx it. Kellie Martin found out about all of this the hard way. And she is speaking out about it now during Lupus Awareness Month. Hoping others wont have to face it.

Kellie Martin: The symptoms of autoimmune diseases are so erratic. They come & go. With my sister, we just came to came to accept them as part of Heather. Heather just sleeps in and she has rosey cheeks. You know... that's just Heather. And now we know that that wasn't just part of her personality, that it was actually an illness. And it was never recognized until she just got so sick....the the symptoms just tumbled on top of each other so that she couldn't get out of bed. And that's what we don't want to happen. We don't want it to ever get to that point for anyone.

D.S.: Because two weeks before....She was fine. Right?

K.M.: Yes, fine. 19, taking her finals, absolutely fine. Just one morning she couldn't get out of bed. She had never been sick in her life. I mean, that's the strange, strange thing about what happens. I can only compare it to like a car accident. It just like (she claps her hands together) you know.....happens. It was just constant after that. I mean, she was...was just constantly sick after that. And that shouldn't happen. I mean we should know to look for.....things like rosey cheeks. That that's a sign of possible lupus. They put up a chart


Joint Pain
Rosy "butterfly" rash across nose & cheeks
Voiced over by D.S.: She also says it is a chronic disease that can go into remission. But there is no cure.

K.M.: I didn't know what lupus was...at all. I mean when I found out she had lupus I was too afraid to learn about it because *sigh* you know, you don't want to know about how bad it could possibly be. I mean, I'm not dumb....I'm a [smart] person.... But that was immediately what I thought of. Oh! There's a cure for this....there has to be a cure...It's not Leukemia.....It's not that bad..... But, there is no cure for this. When Heather was in the hospital, she looked beautiful.... because of this rash. And it's so deceiving, you know. It's just a sign of this war that's going on inside your body.

Voice over by D.S....[also] pictures of Heather & Kellie...Her sister's *war* included dehydration, kidney failure, a respiratory breakdown, liver & bone marrow malfunctions. Details that are too painful for her to remember about a baby sister she says who was never even afraid of the dark.

Cut back to Kellie...

K.M.: The first 5 to 7 doctors didn't get it. They said, "We don't know what it is...We'll just treat her for her pain." And that's all they treated her for.

D.S.: At this point it was acute pain

K.M.: Yes, Acute pain. Acute abdominal pain & muscle pain throughout her body. Mostly abdominal pain was the worst for her. I mean they thought it might have been an infectious disease....like tropical something or other. They didn't think to look to an autoimmune disease. Until very, very late in the game....Too late in the game.

D.S.: What did your sister say to you when she got the dx?

K.M.: I came in the room & she said, I have lupus. I said, "That's OK!!! That's OK!! That's GREAT! I mean, we know what it is...I mean, we can deal with this!" (She said all of this smiling like she was happy at the time. Then became serious once again.) But there is no cure for autoimmune diseases. There are only ways to make you feel better.

D.S.: And when did the two of you confront that?

K.M.: We actually didn't get to. Because she became sick enough that we couldn't actually talk to her. She was sedated. But we never....we didn't have a chance to deal with it as a...uh...a..*sigh*...you know how people deal with an illness? and, and.. fight an illness? It really was...it happened so fast to us that it wasn't even....we weren't even able to fight. And that's why I'm here. Because I want people to be able to figure out what it is that is wrong with them. And so many women, they just need to know that this is a womans problem. A health issue that they need to be aware of. No one should ever, ever have to go through this. (shaking her head)...ever.

D.S.: Tomorrow Kellie Martin will be here again to talk about Life after her sister's death & how returning to ER Helped in the healing process.



Charlie Gibson: We just heard actress, Kellie Martin talking about her sister's sudden & agonizing death from Lupus. This summer we also talked, as you may recall, to Oakland A's outfielder, Tim Raines about his battle with the disease. And so to help us better understand this illness our Medical Editor, Dr. Tim Johnson, is here with us this morning. Tim, I must admit I had never heard of lupus until just a few years ago. When the first family's dog, the Bush's family dog, Millie, was dx'd with lupus. But, obviuosly this is very prevelant, much more so than I ever realized in humans. [As far as] typical symptoms, Diane mentioned some, but you should run through them again.

Dr. Tim Johnson: Well, the truth is that this autoimmune disease can affect almost any organ or system in the body. So, the potential of symptoms is almost endless. But we've got some of the more common ones that will show up:


Fever Fatigue/malaise
Appetite loss/weight loss
Butterfly rash
Nose/mouth sores
Voice over by T.J. The first three symptoms are common with many other diseases. So, it is obvious why it often isn't diagnosed in the early stages...The Butterfly rash is much more distinctive. And then there can be sores elswhere on the body. The truth is ANY body system in the body can be affected

Chart Continues...

Eye Problems
Joint Pain
Kidney Problems
Painful Breathing
Voice over by T.J. Joint pain is often misdx'd as arthritis. Kidney problems can be quite severe. Problems with the lungs, heart, nervous system changes in the mental accuity, etc. It really is tough to dx in the early stages. Because it mimics so many other potential problems.

C.G.: I was gonna say....Those are really very general symptoms with the exception of that rash sounds very specific.

T.J.: Fortunately, there are, now, some blood tests which will help to diagnose it in combination with symptoms. The point is, of course, that the earlier it can be dx'd the more effectively it can usually be treated. Now, sometimes those rare fulminate courses that can lead to death within weeks or months probably couldn't be treated even with an early dx. But the vast majority of people with lupus will have a pretty normal lifespan. 85% survive at least 10 years. So, It's treatable even though it isn't curable.

C.G.: I was gonna say, Tim Raines said to me, he was on a very agressive treatment with steroids & anti inflammatories. Those who die from the disease...They simply don't respond to those drugs?

T.J.: That's basically it. Steroids are the main stay of treatment. Other drugs can be tried in place of, or in addition to, steroids. And when people succumb to this disease it's because these treatments don't work effectively enough. But, again, I stress that the majority of people with this disease will have a very long and fairly normal life.

C.G.: Genetic link?

T.J.: Yes, it tends to run in families. If a mother has it her daughters are at risk, her sons are at greater risk. But, it can occur in anyone for the first time in a family.

(end of transcript)

Greta "Gigi" Garner grew up in Brentwood, California, attended Westlake School for Girls and then attended film school at the University of Southern California.

"Ever since I was little," Greta explains, "everyone has called me by my nickname, which is "Gigi." My mom wanted that to be my first name, but my dad said that would be OK if I grew up to be a stripper, but if I grew up to be a rocket scientist that 'Dr. Gigi Garner' didn't sound very professional! So, now that I am grown up, (39 and holding .... and holding ... and ... ) I switched to my real name, which is Greta."

Grown-up Greta has been a recording artist in England, a staff songwriter at Word Records, writing three number 1 songs in 1995). Also a licensed private investigator, she did "original research" for her book The Cop Cookbook 

Says Greta, "I guess you could say I'm a "Jack-lyn" of all trades!"

Actor James Garner, who has a special message regarding lupus, the disease that has affected his family personally. Daughter Gigi has suffered from lupus for years and is an important member of the Lupus LA team. **Note, Mr Garner is wearing the orange bracelets, "Get Into The Loop" from last years campaign. (I have many still available $1 each + postage)


"Rock" Raines, with his infectious laugh and exciting aggressiveness, became a fan favorite wherever he went. Over the 1980s, Raines was inextricably linked to Rickey Henderson, because of their similar ages and the havoc they wreaked on the basepaths. But while Henderson gained more fame by stealing more bases, Raines' percentage was generally higher. And even though baseball played a slight second fiddle to hockey north of the border, Raines was instantly recognizable on the streets of Montreal. At the end of his career, after a spurt of leg injuries and a terrifying bout with lupus, the muscular leadoff man had made a strong case for the Hall of Fame, with over 800 stolen bases, 1,500 runs, and a .294 lifetime average.

Raines achieved early stardom in the American Association as a second baseman while earning the batting title with a .354 average and being named The Sporting News Minor League Player of the Year in 1980. Converted to the outfield for his official rookie campaign in 1981, Raines captured the first of four straight stolen base titles with the Montreal Expos and finished a close second in the Rookie of the Year Award voting to Dave Righetti at the end of the season. That early-'80s Canadian team was a powerful configuration of ballplayers, a far cry from the cash-stricken lot of the '90s. Though they only reached postseason once in the strike-ravaged 1981 season, with Gary Carter, Andre Dawson, Steve Rodgers, and Jeff Reardon teaming with the speedy outfielder, the Expos were not to be taken lightly.

Like a handful of players and celebrities in the go-go '80s, Raines found his way to cocaine even in the upper reaches of Montreal, and underwent rehabilitation following the 1982 season. After two months in a treatment center, the outfielder was back on track and found comfort in his wife and son, Tim Jr., who would one day follow in his father's footsteps.

Raines reached career highs in steals (90) and runs (133) in 1983, leading the NL in both categories. Over the next four years, Raines averaged a .323 batting average, and just over 66 stolen bases and 108 runs scored. In 1986, Atlanta pitcher Rick Mahler acknowledged how much Raines could rattle a moundsman, calling the leadoff hitter "the best offensive player in the league besides Dale Murphy."

Opting for free agency after his 1986 batting championship season, Raines found that the baseball owners' collusion on free agents left him without an offer. He returned to the Expos in May 1987 with neither spring training nor a warm-up stint in the minors, homered in his first game, and led the NL with 123 runs scored for a second year in spite of the missed time. Replacing the departed Andre Dawson in the three-slot in the lineup instead of hitting in his usual leadoff spot, Raines also hit a career-high 18 homers. However, his new position in the order forced him to relinquish some of his aggressiveness on the basepaths, and he stole 20 fewer bases than in 1986.

The following year Raines was hampered by injuries, including his first-ever trip to the disabled list, as his average dipped to .270 for the first time in his career and his 33 stolen bases were the fewest he had recorded in a season. After two more years with the Expos, Raines was traded with Jeff Carter to the Chicago White Sox for Ivan Calderon and Barry Jones in December 1990.

Under the management of Jeff Torborg, Raines was pushed back up to the number one slot to to replace the unreliable Lance Johnson. Though he recorded "just" 51 stolen bags, Raines crossed home over 100 times for the first season since '87. Despite losing a month and a half with a torn thumb ligament in 1993, he helped push the White Sox to the postseason, while batting .306 with 21 stolen bases in 115 games in the regular season. The leadoff man led Chicago regulars in batting in the ALCS, with a .444 clip against the Toronto Blue Jays, but it wasn't enough to keep the steamrolling Jays from advancing to and winning the World Series.

However, Raines' initial dream of batting leadoff for the White Sox in front of run producers like Frank Thomas and Robin Ventura soon turned bitter. Rock's slide to a .266 average with 13 stolen bases in 1994 was a disappointment to the Chicago front office. After another subpar performance the following season, the outfielder was traded to the New York Yankees in December 1995 for a player to be named later, clearing the way for the White Sox to acquire Tony Phillips.

It would be with the Yankees that Raines finally took home some World Series hardware. Just a month into the Bombers' championship season of 1996, Raines severely pulled a hamstring, sidelining him until mid-August. However, he came back to finish the regular season with a respectable .284 batting average and 10 stolen bases, and contribute eleven hits in the postseason.

Leg problems would continue to affect the aging Raines' performance and playing time. Though he did bat .321 and .290 over the next two years, the outfielder was limited to just 183 games in that span, battling hamstring and knee injuries. After the Yankees' domination of the regular and postseasons of 1998, Raines had arthroscopic surgery on his left knee.

In January 1999, he signed with the Oakland Athletics, but by mid-season was batting just .215 with a .337 on-base percentage, both by far his worst marks to date. Though an aging body could explain some of the effects, it could not account for the overwhelming lethargy Raines sometimes felt. In July 1999, after mysteriously gaining 28 pounds in three days, his skin tight across his face, the outfielder was diagnosed with lupus and took his leave from baseball to undergo treatment immediately.

After a physically and emotionally trying year, Raines had subdued the disease and attempted a comeback with the New York Yankees. At 40 years old, recovering from both lupus and the effects of a 21-year career, the outfielder was, by any stretch of the imagination, a longshot to make the club. Towards the end of spring training, realizing that he would not survive the cut with Lance Johnson and Roberto Kelly vying for backup time in the outfield ahead of him, he opted for retirement.
Following his announcement, Raines was invited to a tryout for the 2000 Olympic team, a squad that eventually would win the gold medal in the Sydney Games. He made it to the last cut before being passed over in favor of more youthful players.

With his son Tim Jr. accelerating through the Baltimore Orioles' farm system, Raines was tempted once again by the national pastime. Saying "I think it's destiny for both of us to play at the same time," Raines accepted an invitation to the Montreal Expos' spring training in 2001. Not only did the veteran outfielder have the opportunity to play against his son in an exhibition game, but he also made the team as a fourth outfielder, joining Henderson, Mike Morgan, and Jesse Orosco as the only four players active in the '70s still playing in the '00s. Raines came out hustling, but a shoulder strain sustained just a month into the season when diving back to first base, shortened his year dramatically.

Raines ranks just behind Henderson, Lou Brock, Billy Hamilton, and Ty Cobb as just the fifth member of the 800-steal club. At the turn of the millennium, his stolen base percentage of 84.7% was the highest in baseball history for players with 300 or more attempts, ahead of both Henderson (80.8%) and Brock (75.3%).

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