What to know about multiple sclerosis: 'It's not a death sentence'
Jamie-Lynn Sigler is many things: an actress on both small and big screens (she's most famous for her role on The Sopranos), a newlywed and an eating disorder activist. And now, with her brave announcement today, she can add role model to the list.
The 37-year-old revealed to People magazine that she's been living for over a decade with multiple sclerosis (MS), an autoimmune disorder that causes the body to attack the myelin sheaths on the outside of nerves causing serious neuromuscular problems. She admitted that she's still struggling to accept her diagnosis, especially after working so hard to hide her symptoms during her TV career, but now she's ready to talk about her struggle.
"I can't walk for a long period of time without resting. I cannot run. No superhero roles for me," Sigler said. "Stairs? I can do them, but they're not the easiest. When I walk, I have to think about every single step, which is annoying and frustrating."
Annoying and frustrating are putting it mildly says Vanessa Richard, a 33-year-old mom of three from Washington, who also has MS.
"It's hard because I'm young and I have this disease that will cripple me and there's nothing anyone can do about it," she says. "The worst part is that you don't look sick but you definitely are. I feel like I'm always having to justify it and explain myself to people."
Richard says she sympathizes with Sigler and that she too has lost a lot to the illness. A former cake decorator, she had to quit when she lost strength in her hands. "But really it's not being able to play with my kids like I used to," she says, tearing up just thinking about her 9, 6 and 3-year old. "It hurts... It really does."
Sigler is also a mom, to 6-year-old Beau.
But the illness can do funny things and, speaking of children, Richard says she's now pregnant with her fourth child thanks to her MS meds cancelling out her birth control. It's a blessing though, she says, as pregnancy puts her MS into remission. And it's this life — her children and devoted husband — that keep Richard fighting despite the chronic fatigue and pain.
"There's definitely a stigma of 'Oh you have a disease, we have to feel sorry for you' but I'm determined not to be a burden on anyone, especially my family," she says.
Sigler and Richard are just two of the nearly half million Americans and 2.3 million people worldwide who have MS, according to the National Multiple Sclerosis Society. Although doctors believe the number could be higher as many mild cases go undiagnosed for years. This was the case for Richard, who started showing symptoms at age 16 but didn't get an accurate diagnosis of MS until she was 30 and showed up in the ER with a skull-crushing headache. Doctors finally ordered an MRI and were able to spot over 60 active lesions.
Richard's story is not unique. MS can be tricky to diagnose because the symptoms — vision changes, muscle weakness, fatigue, dizziness, loss of coordination and problems with motor control — are easily written off as stress or misdiagnosed as something else. While some people have very severe cases, including partial paralysis, most cases are relatively mild. In addition, the symptoms can wax and wane with sufferers being fine for months or even years between attacks.
It's unknown exactly what causes the body's immune system to turn on itself in this way, but the National Institutes of Health says that the cause may be genetic, environmental or even viral (or all of the above). Weirdly, the environmental factor that may make the most difference is how far north or south you live, as the number of MS cases increase the farther you get from the equator. (Richard says the changing of the seasons is her biggest trigger for an attack.) Age also is a factor, as is gender. Most cases are first diagnosed between 20 and 40 years of age with twice as many female patients as male. Diabetes, thyroid disease and bowel disease can also increase your risk of getting MS.
While there is no cure and the disease gets progressively worse over time, the prognosis is generally good, reports the NIH. The illness can be debilitating but is not considered fatal and doesn't appear to shorten lifespan.
But there are some promising treatments with the most common being beta interferon and other therapies that suppress the immune system, preventing it from doing further nerve damage. Steroids and other medications, like the Tecfidera Sigler says helps her, can manage symptoms and shorten attacks. In addition, patients are encouraged to modify their lives by avoiding heat and excessive activity, according to the NIH.
It's this hope that Richard clings to in the face of all this uncertainty. "When I first heard the diagnosis, I thought it was a death sentence," she says. But now she says she wants to be an advocate, helping others with the disease and encouraging more people — especially those who live in the far north — to get screened. "The more we know, the more research there is, the better chance we have to get the answers we all need."