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Julianne Moore Calls For Tuberous Sclerosis Awareness

Julianne Moore holds Tommy Lindsey at the Rock for a Cure event.
Photo Credit: Joshua Carp.
By John Morgan, Spotlight Health
With medical adviser Stephen A. Shoop, M.D.

It's not every day that you meet a real life celebrity. It's even rarer still that one would call you after a chance encounter and volunteer to help your family. But that's exactly what actress Julianne Moore did for Thomas and Peggy Lindsey and their three year-old son Tommy who has tuberous sclerosis complex.

"I think the most important thing we need to do right now is raise awareness about tuberous sclerosis," says Moore, who starred in the hit sequel Hannibal. "It's a genetic disorder and it's more common than people might realize. The hope is that it can be identified and treated earlier rather than later."

TSC causes benign tumors in different organs. The most symptomatic usually involves the brain but also involves the kidneys, skin, lungs, eyes and heart. It is estimated that 1 in 6000 live births has TSC or approximately 50,000 Americans and one million people worldwide have the disorder. The disease afflicts all racial groups and both sexes equally. Undiagnosed and untreated TSC can be fatal.

"I was on my way home to pick up my daughter and I passed this guy with a little boy in a stroller and he smiles and I smiled back and he said, 'Hey are you Julianne Moore?'" explains Moore, who also has starred in the movie The Forgotten.

"My wife and I have written so many letters to news stations and shows for years with no response," Thomas Lindsey explains. "So I decided this was an opportunity of a lifetime to help get the word out about tuberous sclerosis. We promised ourselves we would do every thing we do to raise awareness about it."

"Well he introduced himself and started talking to me about his son Tommy who had just had brain surgery," Moore continues. "I looked down and there's this sweet, happy, loving, little boy who still has stitches in his head."

"Tommy climbs into her arms and starts kissing and licking her and we're all cracking up," Thomas adds. "I showed her the photos of the surgery and she got all welled up. She took my phone number and promised to get back to me about attending our fundraiser."

Shining star

A few weeks later Moore called to say she'd be joining the Lindseys at the inaugural Rock for a Cure 2003. The event raised money for the Tuberous Sclerosis Alliance, NYU Medical Center's Tuberous Sclerosis Center and Volunteers of America's Staten Island Early Learning Center.

"It was unbelievable," says Peggy Lindsey. "Julianne said she would do anything she could. She donated all this amazing stuff she owns for our auction. She's just been incredible. We can't get over it."

"I don't have time for premieres because I have two kids I'd rather be home with," Moore says from the set of her new film Marie and Bruce. "But for something like this that deserves attention I am happy to use whatever celebrity I have to focus people on tuberous sclerosis. I think every parent's #1 priority is their children's health and well-being. And to think that that could be threatened in any way has to be very difficult."

For the Lindsey's, learning their five week-old son had TSC was more than difficult. It was both frightening and agonizing.

Tommy's first symptoms were a series of seizures.

"After a bunch of MRIs and CAT scans, they told us Tommy had a lot of tumors in his brain," Thomas says. "Our pediatrician called us and told us that the preliminary diagnosis was TSC. And the first thing we said was, 'What is that?' We even asked a bunch of the doctors and nurses and no one had even heard of it. So one of the nurses got a medical journal and we read a two paragraph definition of it."

"The neurologist comes in the next day and says, 'It's very bad. Your son has tuberous sclerosis and he's probably going to be both mentally and physically retarded and you might want to consider institutionalizing him,'" Thomas recalls.

"It was devastating," Peggy adds. "Especially because weeks later we realized he had just read the definition we had read the night before and didn't have any real experience with TSC."

"Thank God our pediatrician, Dr. Ronald Kipp, stepped in and said, 'We're taking your son out of here,'" Thomas says.

TSC 'evolution'

Kipp directed the Lindseys to Dr. Orrin Devinsky, a renowned specialist in TSC, who put Tommy's disease and their treatment options in realistic perspective.

"I saw Tommy when he was seven weeks old," Devinsky, who is the director of the New York University Epilepsy Center. "His main problems were benign tumors in the brain, developmental delays and seizures."

Other common symptoms can be:

  • Learning disorders
  • Behavioral problems
  • Skin problems - decreased pigment and/or angiofibromas (red wart-like bumps)
  • Cardiac abnormalities

According to Devinsky, TSC has a wide spectrum of involvement - from children with mild skin problems and some benign tumors in their kidneys to infants like Tommy who have seizures in the first several weeks of life to others who die in the mother's womb. Some children will even fit criteria for autism.

"Tommy was treated with antiepileptic medications but unfortunately, none of them controlled his seizures," Devinsky says. Over the next three and a half years, Tommy continued to have as many as 20-30 seizures per day - which is a terrible burden.

Devinsky says that as a three year-old Tommy was functioning at the level of a 17 month-old. "So clearly the seizures were contributing to the developmental delays."

After a year of discussions, the Lindseys finally opted to have Dr. Howard Weiner perform a complicated three-stage brain surgery on Tommy.

During the first stage, Weiner removed a small piece of the skull and placed a plastic grid to record various parts of the brain during seizures. In the second stage, Weiner removed the area that was most active which corresponded with one of the benign tumors in the right frontal lobe. And after recording more seizures, Weiner did another significant removal of a tumor and the adjacent epilepsy tissue in the right temporal lobe.

End of the affair

"Tommy has recovered phenomenally well," Devinsky reports. "Our goal was to reduce the seizures by 80% -- that would have been fantastic. So far he has been seizure-free for four months. He's on two antiepileptic medications but less than before. Our plan will be to watch him and hopefully reduce the medications."

"We saw a change immediately after surgery," Peggy says. "For instance with speaking, Tommy was non-verbal - he could only say a few words but right afterwards in the hospital he was trying to repeat words. He was actually trying to communicate with us. And his attention span also dramatically improved."

"We need to promote more awareness and we need funding to find a cure," Peggy adds. "I don't want people to go through what we did with a doctor giving us terrible news when he had no idea what he was talking about. Each case of TSC is so different and it's not a death sentence. And there are other parents like us who have been through this that people can turn to for support and to ease the pain because there is a lot of hope."

"Although it is an uncommon disorder, by doing TSC research we will learn how to better treat epilepsy which affects almost 2.5 millions Americans," Devinsky notes. "And learn more about treating tumors by understanding the function of the tumor suppressing genes. This means learning about TSC could conceivably be the answer to some cancers."

"We just need to get the ball rolling and start people thinking about this disease so we can help more kids like Tommy," Moore concludes. "It's a start and I'm thrilled to be able to help."

For more information on Tuberous Sclerosis, click here.

Spotlight Health is the leading creator of celebrity-featured health-issue awareness campaigns, connecting consumers with impassioned celebrities whose personal health battles can open eyes, dispel myths and change lives. Spotlight Health helps sufferers and caregivers meet the challenges of difficult health circumstances with understandable, in-depth medical information, compassionate support and the inspiration needed to make informed healthcare choices.

Created: 6/2/2003  -  John Morgan & Stephen A. Shoop, M.D.
Reviewed: 6/2/2003  -  Donnica Moore, M.D.

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