Selma Blair shares new details of life with MS in remission: 'It haunts my physical cells'

Since Selma Blair first revealed her diagnosis publicly in 2018, she’s been open about her experiences with multiple sclerosis. And, as the actor told Self in a new interview, she's in remission but still has some noticeable symptoms.

“I’m so much better, but it haunts my physical cells. It’s there,” Blair said in the new interview. “Some people wake up two years later, and they’re like, ‘I’m healed! Colors are brighter!’ But I never had that moment. I just stopped having regression.”

In particular, Blair told Self that still has some mild dystonia, which causes involuntary muscle contractions resulting in altered speech and spasms in her leg. She also continues to use a cane and notices that her leg may go numb if she sits for extended periods of time.

MS is a neurological condition that occurs when the immune system attacks and damages the myelin sheaths that cover nerve fibers, according to the Mayo Clinic. That can interrupt the signals between the brain and the body, resulting in symptoms such as tingling, numbness or weakness as well as issues with mobility or gait, double vision or blurry vision and fatigue.

People with the most common form of MS typically have relapses, which are "occurrences of a new neurological symptom that are caused by an acute attack of MS," Dr. Robert Bermel, neurologist and director of the Mellen Center for Multiple Sclerosis at the Cleveland Clinic, tells Without treatment, most people would experience a relapse every 12 to 18 months, he says.

So, the goal of treatment is to halt the worsening of symptoms, prevent new symptoms and extend the remission time between relapses. In clinical trials, researchers are typically looking for remission periods lasting two or five years, Bermel says, "and what we really want is even longer than that."

For those with progressive MS, which tends to be less common than relapse-remitting MS, “it’s much harder to achieve remission,” Bermel says.

In Aug. 2021, Blair revealed that her MS was in remission following a type of therapy known as hematopoietic stem-cell transplantation. The procedure, also called HSCT, can be administered according to a wide variety of protocols but generally involves the use of potent chemotherapy and stem cells, Bermel says.

But it's important to recognize that remission doesn't usually mean a complete absence of symptoms, Bermel explains. Every relapse is essentially an attack that "leaves scars behind in the nervous system," he says. "And people can have very persistent symptoms related to those scars."

What remission really implies is “stability,” Bermel explains. “And people can be stable with an existing set of neurological symptoms or deficits.” He also emphasizes that "MS is different for everyone," and what works for one person may not work for another.

For Blair, the experience of MS — and sharing her experience — has evolved as she's become a highly visible advocate for people with disabilities by appearing, for instance, at the Emmys last year with her cane.

She doesn't find the "advocacy trying," she told Self, because she knows "it’s for other people more than myself, and it makes me feel better. It really does." And that kind of visibility doesn't just matter for the disabled, she said. "Visibility matters for everyone. You have to show that you’re still alive.”

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