Actress Selma Blair wants the world to know what it’s like to live with multiple sclerosis (MS), especially the “aggressive” form she was diagnosed with in 2009 and made public in October 2018.
Just days before appearing at the Vanity Fair Oscar party sporting a chic leather monogrammed cane with a pink diamond on top, she sat down with Robin Roberts on Good Morning America for a wide-ranging and candid conversation about her condition, which she called a snowflake disease. “It’s different, like a fingerprint, for everyone,” Blair told Roberts.
During the interview, Blair relied on a cane for stability and support as she walked around her property with Roberts and spoke with a noticeable quiver in her voice. She explained to Roberts that she uses a cane due to balance problems and has spasmodic dysphonia, a relatively rare symptom of MS that causes spasms in the vocal cords, which makes the voice sound strained.
Indeed, some studies indicate that fewer than 2 percent of MS patients experience spasmodic dysphonia, says Barbara S. Giesser, MD, FAAN, professor of neurology at the David Geffen School of Medicine at UCLA, and an MS specialist, who has never treated Blair. Treatment for the symptom includes vocal therapy and botulinum toxin (Botox), says Dr. Giesser. “Botox is injected into the vocal cords to stop the spasm.”
About 50 percent of people with MS have voice and speech problems, Dr. Giesser says. More common challenges are slurred speech and a symptom called scanning speech, where the normal rhythm and flow of speech is disrupted by long pauses, creating a staccato or uncoordinated effect, she says. These problems arise, she explains, because MS affects centers in the brain that help control functioning of the vocal cords and coordination of speech production.
In the interview, Blair said her disease was aggressive, although she did not specify what form of MS she has. Dr. Giesser says “aggressive” disease might be used to describe someone who has a lot of exacerbations of symptoms such as increased fatigue, numbness, and muscle spasms with poor recovery between attacks. It can also mean that MRI scans have revealed more lesions and/or inflammation on the brain or spinal cord. Dr. Giesser also notes that it’s not uncommon for symptoms to flare up after childbirth. Blair told Roberts her MS worsened after the birth of her son.
Blair’s exacerbation of symptoms after childbirth caught the attention of Vickie Smith Siculiano when she watched the Good Morning America interview. Siculiano, 46, was diagnosed with MS in 2007. She, too, experienced worse symptoms after her son was born in 2015. “Selma Blair is exactly my age,” says Siculiano in an interview with Brain & Life. ”And she progressed after she had her son, so I am very connected to her story.”
Siculiano thinks Blair is “pretty amazing” for opening up about her disease. So does Lisa Cohen, who was diagnosed with MS in 2001, and who also spoke with Brain & Life after Blair’s interview with Roberts. “I think it's brave of her to come forward and I applaud her for it,” says Cohen, who reposted photos online of Blair at the Vanity Fair post-Oscar party. “There was this amazing photo of her where she’s lifting a part of her dress in such a way that it looks like a super hero cape.”
Cohen believes that Blair’s visible symptoms—her speech and use of a cane—are likely to make people take the condition more seriously. She also hopes Blair’s openness and willingness to be out in public will encourage people in the MS community to be less shy about their own disease. “People with visible symptoms are often embarrassed and probably stay in more. They may be worried about being seen using a mobility aid. Now that Selma has walked the red carpet with her cane in front of the world it might make people a little less hesitant.”
Dr. Giesser agrees. “I always think it’s wonderful when a public figure is brave enough to give information about his or her personal challenges with the disease. I think it raises awareness,” she says. “It lets people know it’s nothing to be ashamed of or to hide. Most people with MS continue to work and go to school and raise families and live their lives.”
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