The actress Selma Blair appeared at the Vanity Fair Oscar party on Sunday evening wearing a diaphanous Ralph & Russo gown and carrying a custom-made cane covered in black patent leather.
It was her first public event since she announced in October her diagnosis of multiple sclerosis, a chronic and often disabling disease affecting the central nervous system.
In an interview that aired on ABC’s “Good Morning America” on Tuesday, Ms. Blair, 46, spoke to the news anchor Robin Roberts about what it was like to live with the disease, which has affected her speech and made it difficult for her to walk unassisted.
Ms. Blair, who has appeared in movies including “Cruel Intentions,” “Legally Blonde” and “Hellboy,” said she had been experiencing symptoms at least since her son was born in 2011. She said she did her best to handle the intense fatigue, emotional distress and loss of physical control. But the disease was not formally diagnosed until August.
“I was ashamed and I was doing the best I could and I was a great mother, but it was killing me,” she said. “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 noted that she had spasmodic dysphonia, a condition that makes it hard to control the muscles in the larynx. But for many people who have multiple sclerosis, her words came through loud and clear.
Josie Benassi, 47, caught the interview on television on Tuesday at her home in Reading, Mass. She received her diagnosis of M.S. in 2009, and like Ms. Blair, she had experienced symptoms for years before that.
It started when she was a teenager and the vision in her left eye suddenly got fuzzy. There were additional small warning signs as the years went on, but things took a serious turn about 10 years ago when she took her children to an ice-skating rink and realized she couldn’t stay upright on her skates.
Sometimes Ms. Benassi got tired. Sometimes she lost her balance. Sometimes her left leg just stopped working. For years, she has been learning to live with the symptoms.
She said she was happy to see Ms. Blair talk about the disease with candor. “It’s so good that she’s out there, just showing people that it’s O.K.,” Ms. Benassi said.
In studies published in 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 learned she had 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.”
