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Selma Blair went undiagnosed with MS for 40 years; she's working with charity to find a cure

Selma Blair is working with the charity Race to Erase MS in an effort to find a cure for the autoimmune disease. Founder Nancy Davis spoke with Fox News Digital about the actress.

Selma Blair is joining the Race to Erase MS.

The actress has been open about her struggles living with multiple sclerosis since being diagnosed in 2018. Earlier this month, she revealed she went undiagnosed for 40 years despite showing symptoms.

"If you’re a boy with those symptoms, you get an MRI. If you’re a girl, you’re called ‘crazy,’" she told British Vogue. "I looked like a ‘normal’ girl to them, but I was disabled this whole time."

She has since partnered with Race to Erase MS, a nonprofit organization dedicated to advancing treatment options for patients and ultimately finding a cure. Founder Nancy Davis told Fox News Digital how proud she is of Blair, noting how far she's come.

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"It's been challenging for her, but to look where she is today and that she actually went through this whole treatment. And then she was on ‘Dancing with the Stars.' I mean, most people, no matter how young and agile you are, you could never do ‘Dancing with the Stars,’ especially somebody who has MS," Davis said. 

"Hats off to Selma Blair for being such an iconic role model for so many people who feel like, because they have MS, they can't achieve that dream. They can, because Selma did."

Davis started the charity in 1993 after she was diagnosed with MS, an autoimmune disease that damages nerves, which interferes with brain signals reaching certain parts of the body. 

She recalled receiving "such negativity" when she was first diagnosed. Davis was 33 years old with three kids and said she was essentially told "I would never walk again."

She went for a second and third opinion and "listened to the research going on at the time" by doctors from Yale, Harvard, Cleveland, San Francisco and Johns Hopkins. She soon realized they "were all doing identical research but were convinced they were the only one doing that study." The doctors, however, couldn't accept that as truth when Davis told them.

"Shortly after I started the Race to Erase MS, we created something, virtually 30 years ago, called the Center Without Walls, where all of our doctors had to come together and meet in person four times a year. They had to communicate monthly via a database about all research. Good and bad."

Davis has noticed a lot of positive changes since she was diagnosed. She said early medications came with a lot of side effects and only worked on around 40% of patients. Now, there are over 25 medications that help prevent MS flare-ups.

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"Today, there's these B-cell depleting drugs that are completely knocking everything out of the ballpark," she explained. "If you are newly diagnosed with MS and you go on … right away that suppresses your B cells. It stops the MS in its tracks. It's pretty darn exciting."

The medications do not help those who have had the disease many years, but Davis is excited to provide "a whole different future" for young people who are diagnosed today. 

"It's such a devastating thing to say: 'I'm going to never be able to live my life. I can't be a parent. I can't have my job. I can't seek all the things I've been dreaming about forever,'" Davis said. "Today, you can. There's so much hope, and it's really exciting."

MS is difficult to diagnose because "different people have different kinds of MS," and no two people will necessarily exhibit the same symptoms. Symptoms generally include loss of vision, weakness, numbness, imbalance and chronic fatigue.

Many celebrities have rallied behind the cause. Earth, Wind & Fire, Avril Lavigne, KISS, Elton John and other musicians have performed at an annual gala in the past. Stars like Kris Jenner, Sarah Michelle Gellar, Paris Hilton, Rumer Willis and Victoria Justice have attended.

Sharon Osborne became a supporter of the charity when her son Jack Osborne was diagnosed in 2012 at the age of 26.

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"When he was first diagnosed, Sharon contacted me, and she was very frantic because her son was newly diagnosed. And she had me really help them out in the very beginning," Davis explained. "And now Jack is fabulous. Jack's doing really, really well. They have both been so supportive."

Davis also recalled the very first Race to Erase MS event, which Dustin Hoffman attended.

"His mother-in-law had MS, and they were in the very first years, and we did an Olympic event at the UCLA stadium," she said. "It touches lots of families, and it's one of those diseases that a lot of people don't want to talk about. But it's out there, and there's a lot more to be talked about and not be ashamed." 

Davis is also excited to have removed some of the stigma surrounding an MS diagnosis, saying when she was first diagnosed, people were worried about hugging or kissing her because they were afraid she was contagious. 

She remembered initially not wanting to let anyone know about her diagnosis. But once she did, she felt "validated" because she no longer felt like people were talking behind her back. 

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"I've been so lucky with my MS. I'm doing really, really well," Davis explained. "I thank God every day for that. I'm very positive. I do every positive kind of affirmation you can possibly do, because I have to see this through. And I'm excited [about] where I am today and where we are today and that we're, gosh, having our 30th race."

This year's event is scheduled for June 2 at the Fairmont Century Plaza in Los Angeles and will feature performances by Flo Rida and Siedah Garrett and a fashion show by the clothing brand Cinq à Sept.

"You can't not have the best time when Flo Rida is in the room. He makes everybody dance, and he throws them all on the stage. He even throws people in wheelchairs on the stage," she said excitedly. "He just picks them up, and you're like, ‘Really? Can you do that? Is that OK?’ But he does, and he's fabulous."

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Photography by Christophe Tomatis
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