Editorâs Note (Jan. 27, 2016): Jamie-Lynn SiglerÂ appeared on the Today show this morning and spoke about the great sense ofÂ relief she has experiencedÂ after revealing that she hasÂ MS.Â
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Jamie-Lynn Sigler is finally openingÂ up about a private battle she's been facing for the past 15 yearsâliving with multiple sclerosis.
In a new interview with People, theÂ Sopranos actress explained that she wasn't ready to speak out about her condition until now: "You'd think after all these years somebody would be settled with something like this, but it's still hard to accept."
Multiple sclerosis (MS) is a diseaseÂ in which the body's immune system attacks myelin, the protective sheathÂ around nerve cells thatÂ helps send messages to the brain and other parts of the body.Â Common signs ofÂ the diseaseÂ includeÂ trouble walking and maintainingÂ balance, fatigue, sensations of numbness or tingling,Â and vision problems. But depending on whichÂ nerves are affected and the level of damage, symptoms can vary widely from person to person, and may not surface right awayÂ or progress steadily.
Sigler, 34, told the magazine that she was initially diagnosed at age 20Â andÂ wentÂ symptom-free "for quite some time." It wasÂ duringÂ the last decade that the newlywed and new momÂ began to struggleÂ withÂ the often unpredictable effects of the disease.Â "I can't walk for a long period of time without resting. I cannot run," she 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."
Because no two cases are alike, and MSÂ can be so trickyÂ to understand, we reached out toÂ several individuals who are living with the disease,Â and asked them what they wished other people knew about it. Here are their stories.
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"Even when we're in periods of remission, we are struggling psychologically on a daily basis." âÂ Meagan Freeman, 41, family nurse practitioner
It was a "strange" transitionÂ from caregiver to patient for Freeman, who says she has managed to find a way to play both roles in the six years since her diagnosis: "I have drastically changed my diet, tried to reduce stress as much as possible, and I have learned that I need to say 'no' sometimes in order to remain healthy."
One thingÂ that has surprised her is how people tendÂ to think ofÂ MS patients in two ways:Â "Either complete and total disability, or a perfectly normal person with a minor illness," says Freeman, who now blogs for theÂ Multiple Sclerosis Association Of AmericaÂ (MSAA). The reality is that some peopleÂ can become seriously disabled during flare-ups, but remain relatively functional at other times, she explains.
FearÂ of the future, however, is something they all share, she says: "It is inescapable with an incurable disease."Â To escapeÂ the worry, sheÂ tries toÂ live by theÂ mantraÂ It could always be worse.Â "There is always something to be grateful for," she says, "no matter how small."
"I don't think of myself as a woman with MS most of the time." â Liz Sagaser, 35, publishing and campaign strategist for aÂ nonprofit organization
"I am not in denial," saysÂ Sagaser, who was diagnosed on Nov. 13,Â 2007, her father's birthday. "But overall, MS hasn't stolen my function, and I feel hopeful because of this."
At the time of her diagnosis, she had been married to her husband for eight years, two of which they'd spent trying to get pregnant.Â "The community neurologist who diagnosed me wanted me to start on a disease-modifying drug therapy right away, but I wasn't going to set aside our plans to have a family."
Now a mom of two, SagaserÂ hasÂ been on the same disease-modifying medicationÂ for five and a half years, and has not gone throughÂ a clinical relapse.
"I experience neuropathy in my hands and feet, fatigue, word recall issues, and sometimes long-term memory lapses," she says. "ButÂ I consider people who seem to have a more virulent form of the disease, and whose health seems to decline more rapidly and noticeably than my own, and I'm grateful that my legs work, my arms work, my hands work. and my mental faculties are intact."
"I never imagined I would be 40 years old and living at home with my parents." â Christina Aivazoglou, 40, former personal trainer
AivazoglouÂ remembers when her days were spent at the gym training clientsâno wheelchair, no leg brace. Now, with little mobility in the left side of her body, she requires help from anÂ aid and her mom to eat, wash, style her hair, and more.Â "Although I am very lucky to have them, it sucks," she admits.
Although she has triedÂ many drugsÂ that failed her, Aivazoglou continues to experiment with different options.Â In addition to disease-modifying therapyÂ medications, she takes a sleeping pillÂ andÂ uses medical marijuana to help preventÂ muscle spasms during the night.
But herÂ biggestÂ challenge, she says,Â is coming to terms withÂ the role reversal she has experiencedÂ with her daughter, who is now 10 years old. "I want to be able to drive my daughterÂ to dance, spot her while she does a gymnastics move," says Aivazoglou. "Instead my daughterÂ is helping take care of me, calling 911 when I fall."
"Itâs all trial and error in figuring out how our bodies can best cope." â Stacie Prada, 45,Â county treasurer
The first signs of fatigue and numbness eight years ago didn't phase Prada. "I just thought each time I was exhausted that I was fighting a cold, stressed, or working hard and needed to rest," she says. "I assumed all would be fine, and I even ran a 12K race with fatigue and a numb body."
On the morning of her son's graduation, Prada finally saw a specialist. "The neurologist acted as though it was no big deal to tell me I had MS, gave me information on four disease-modifying medications to review to decide which one to take, suggested I sign up for Bike MS, and gave me [a]Â book," she remembers. "I was dumbfounded."
Today her fatigue isÂ near-constant. "I diligently monitor my energy level, and I take it seriously when it dips to the point of feeling like regular living is like trying to walk through water."
Her newÂ attitudeÂ isn't to "fight" or "battle" the disease. "That [language] never resonated with me," says Prada,Â who also blogs for theÂ MSAA. "Constantly fighting seemed exhausting to me when I was already experiencing extreme fatigue.Â Thinking of my body as a buddy that is doing the best she can made me feel like I had some control. It made me feel like I could help my body continue to do as much as possible for as long as possible."
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"A lot of peopleÂ don't talk about it, but it does take a toll on your sex life." âÂ Michelle Tolson, 41, PR executive and dance teacher
Tolson is the first to admit that MS can shift the physical and emotional dynamics between partners. "Sometimes when you have a flare-up, you just don't want to be touched. You have tingling and numbness in your legs and in your arms and just being brushed by somebody may feel awful," she explains.
Joining separate support groups helpedÂ Tolson and her husband by allowing them to vent about her condition without taking any frustration out on each other: "I don't try to pretend what it's like being in his shoes, because I don't know what it's like to be worried all the time that the person you love is going to get worse."
Tolson'sÂ main concern is "staying as great as I am right now," she says. The former Rockette was back on stage two years ago for an alumni performance, and she's been teaching danceÂ on theÂ weekends ever since retiring from Radio City in 2002.
"It can beÂ possible to feel completely great." â Daryl Bryant, 38, founderÂ of a digital marketing agencyÂ and author ofÂ MS: Living Symptom Free
Fourteen years ago, Bryant beganÂ to experience vision loss and eye pain, which "felt like someone was squeezing my eyeball with a wrench," heÂ says. He sawÂ an eye specialist but was told that everything was fine.
Another year passedÂ before Bryant visited a neurologist who informed him that he had optic neuritis, inflammation of the bundle of nerve fibers that transmits visual information from theÂ eye to theÂ brain. For many people, it is theÂ first indication of MS.
"I was left in shock. All I remember is walking away thinking, MS is the disease that puts you in a wheelchair," he says.
BryantÂ went through a difficult relapse in 2007 that landed him in the hospital. "Every time I stood up I would fall to the side. I felt extreme tingling throughout my body, and I couldn't stop throwing up. I went to rehab and pretty much had to learn how to walk again."
Following that scare, he began studying any information he could find on theÂ disease. Today, BryantÂ has found success with an MS medication and adjustments toÂ his lifestyle that allow him to manage hisÂ symptoms. "I eat a Paleo diet.Â I get up every day at 4:30 to go to the gym. I've run triathlons. I'm living," he says. "So far, there's no wheelchair in sight."