The actress Selma Blair appeared on the Vanity Fair Oscar social gathering on Sunday night sporting a diaphanous Ralph & Russo robe and carrying a custom-made cane coated in black patent leather-based.
It was her first public occasion since she introduced in October her analysis of a number of sclerosis, a power and usually disabling illness affecting the central nervous system.
In an interview that aired on ABC’s “Good Morning America” on Tuesday, Ms. Blair, 46, spoke to the information anchor Robin Roberts about what it was prefer to dwell with the illness, which has affected her speech and made it tough for her to stroll unassisted.
Ms. Blair, who has appeared in motion pictures together with “Cruel Intentions,” “Legally Blonde” and “Hellboy,” stated she had been experiencing signs at the very least since her son was born in 2011. She stated she did her greatest to deal with the extreme fatigue, emotional misery and lack of bodily management. But the illness was not formally identified till August.
“I was ashamed and I was doing the best I could and I was a great mother, but it was killing me,” she stated. “And so when I got the diagnosis, I cried with some relief. Like, ‘Oh, good, I’ll be able to do something.’”
Ms. Blair’s voice wavered as she spoke, and she famous that she had spasmodic dysphonia, a situation that makes it arduous to regulate the muscle tissues within the larynx. But for many individuals who’ve a number of sclerosis, her phrases got here by loud and clear.
Josie Benassi, 47, caught the interview on tv on Tuesday at her house in Reading, Mass. She obtained her analysis of M.S. in 2009, and like Ms. Blair, she had skilled signs for years earlier than that.
It began when she was a young person and the imaginative and prescient in her left eye immediately acquired fuzzy. There had been further small warning indicators because the years went on, however issues took a critical flip about 10 years in the past when she took her kids to an ice-skating rink and realized she couldn’t keep upright on her skates.
Sometimes Ms. Benassi acquired drained. Sometimes she misplaced her stability. Sometimes her left leg simply stopped working. For years, she has been studying to dwell with the signs.
She stated she was glad to see Ms. Blair discuss in regards to the illness with candor. “It’s so good that she’s out there, just showing people that it’s O.K.,” Ms. Benassi stated.
In research printed within the journal Neurology this month, it was estimated that nearly one million people in the United States have multiple sclerosis — more than double the earlier estimate. M.S. can cause different symptoms for different people.
“The fatigue, speech issues, flares and mobility issues are different for each person, yet they can happen to each of us at any time without warning,” said Valerie Taylor, 49, of Pontiac, Ill., who was diagnosed with M.S. in 2012.
“Invisible illnesses are not often recognized because we appear to be ‘fine,’ yet we are anything but,” she added. “Awareness is key as well as aggressive research to find a cure.”
Carol Ann Justice, 45, runs a Facebook group for people with multiple sclerosis and said she received her diagnosis six years ago but felt symptoms long before that. “Selma is definitely correct by saying that doctors don’t hear you, and chalk up your symptoms to tiredness or anxiety, especially for a woman,” she said.
More women than men have had M.S. diagnosed, typically between the ages of 20 and 50, according to the National Multiple Sclerosis Society, a patient advocacy group that funded the studies published in Neurology.
Researchers have not been able to pinpoint what exactly triggers the disease. It appears to be partly genetic, but several other factors — including low levels of vitamin D, childhood obesity and smoking — could also play a role.
“There are some things about M.S. that certainly remain a mystery,” said Kathy Costello, the associate vice president for health care access at the National Multiple Sclerosis Society. “But a significant amount more is known now, versus 20 or 30 years ago.”
She added that the disease could be difficult to diagnose early because the symptoms — like numbness, tingling or fatigue — can have a wide range of causes outside of multiple sclerosis.
Most people with the disease have the “relapsing-remitting” form of M.S., which means that they experience a cycle of worsening and recovery.
Treatment can come in the form of steroids, which help people to recover from relapses, or disease-modifying therapies, which come in many forms but generally tend to focus on managing symptoms in the long term.
Ms. Costello said that in the race to find a cure, comments like Ms. Blair’s were helpful. “It shines a light on M.S.,” she said. “It shines a light on what it is and who is affected by it. Raising that level of awareness is important.”
For Ms. Benassi, one more thing stood out about Ms. Blair’s television appearance: the cane. During the interview, the actress pointed out that the walking aid was adorned with a real pink diamond. “How can we make canes chic?” Ms. Blair asked.
“When she said that, it really touched me,” Ms. Benassi said. “I have my own pink bling cane, which I love.”