Jack Osbourne on Living With Multiple Sclerosis: 'It’s a Bit of a Roll of the Dice'

When Jack Osbourne was diagnosed with multiple sclerosis at age 26, he thought to himself, How do I make lemonade out of this? How do I turn this into something good? His answer: partnering with the pharmaceutical company Teva Neuroscience to launch You Don’t Know Jack About MS, an online platform that provides insight and resources for people living with the disease and their family members. (Check out the latest webisode here.) Now at his five-year milestone with , Osbourne is still working to raise awareness about the disease. He spoke with Health about how he keeps his symptoms under control, his go-to stress relievers, and why it’s so important to live in the moment.

How has your condition changed in the years since you were diagnosed?

I’m doing really well right now—knock on wood. You can’t put a price on that. I’m healthy and haven’t had any significant flare-ups in a long time. I have relapsing-remitting MS, which means you get flare-ups and they go away.

What does a flare-up look like for you?

I’ve had two major ones, which led to my diagnosis. The first flare-up I had, and I had no idea what it was at the time, but my legs went numb for three or four months. They were very sensitive to hot and cold temperatures. If my belt buckle touched my leg it felt like fire. But then when I went and stood in a warm bath my legs would feel freezing. That went away after four months. And then about 18 months later I developed optic neuritis [which can cause eye pain and vision problems], and that’s what prompted me to go to the doctor.

Did you write off the numbness in your legs as an odd symptom that would go away?

I totally wrote it off as, “Oh, this is just some weird thing. I just pinched a nerve; I’ll be okay.” I was 24 at the time, I think. When I couldn’t see very well, I thought this is a problem I should probably get checked out. But I had no idea the symptoms were connected.

RELATED: Could You Have MS? 16 Multiple Sclerosis Symptoms

How is your vision now?

It’s restored, but my right eye never went back to fully normal. I like to say that my left eye is a 4K TV and my right eye is like a TV from the 80s.

Are there any other symptoms you notice day to day?

It’s not every day, but I sometimes experience what a lot of people call “zaps.” It feels like an electric current is shooting up and down your arms and legs, like you touched a hot wire. I used to get them more frequently, like I was getting them every couple of weeks, but now I might go a month or two without.

What is your diet and exercise regimen?

It’s funny, when you get diagnosed with MS the advice doctors give you is to get on a treatment plan, eat sensibly, exercise regularly, and minimize stress. Well, isn’t that kind of a recipe for good living anyway? I do as much as possible to keep my immune system healthy. I do that through eating right—I try and stay away from inflammatory food—and very rigorous exercise. I go to the gym three or four times a week. I go hard. I do CrossFit and endurance events.

RELATED: 6 People Explain What It’s Really Like to Live With MS

What sorts of endurance events?

I’ve done everything from biking, to 10Ks, to Gold Rush challenges, which are like 10 to 20 miles carrying 30 pounds of weight in a backpack. I’m doing a 24-hour adventure race this summer. I like to get after it. But I also don’t like to rub that in anyone’s face.

Do you mean others diagnosed with MS who might not be able to be so active?

Exactly. I have to remember that I am able to do this stuff right now, and I’m proud that I can do it. But there are a lot of people out there with MS who can’t. That’s the really frustrating part about this disease; it’s so different for everyone.

Does stress affect you?

Stress is probably the thing that makes me feel the most MS-ey, so to speak. I feel a physical pull from . It makes me feel spacey. I think times where I do suffer from MS-induced depression, it’s in times of stress.

RELATED: 10 Celebrities with Multiple Sclerosis

What has the emotional toll been like?

The emotional side of MS is the toughest part. Depression is one of the most common symptoms that people with MS share. It’s kind of like the elephant in the room. I even had it the week leading up to my wedding, and I certainly had nothing to be depressed about. I look at my two daughters and, not to get overly sappy, but there is that notion where if they get married, I might not be able to walk them down the aisle. I can get kind of heavy with it. There are times it just comes out of nowhere and really kicks me in the ass.

What are your coping strategies?

I’m a huge proponent of play. I have lots of hobbies I really commit to, and I use that as an outlet to de-stress, which helps with the depression. I’m also a fan of talk therapy. I’ve been going for a few years. I also think it’s important to have a social life.

Have you felt depressed recently?

I’ve actually been doing really well. Lately I’ve just experienced the human element of getting down in the dumps every now and then, but I haven’t had a really altering state of depression in a while.

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How have your relationships shifted?

My family and friends are starting to realize, “OK well, he’s okay. It seems like he’s got a handle on this.” Initially it was like all hands on deck, people asking, “What do you need, what do you want?” Everyone was being very nurturing. My wife is from Louisiana, and I was pretty much raised in England. The cultural differences when you’re British and you’re sick and you’re from the South and you’re sick are like night and day. When I get sick, it’s like, “Leave me alone, don’t talk to me, I’ll let you know if I need anything.” If my wife is sick, it’s like, “Rub my feet! Do this, do that! I need water!” I take the stiff upper-lip approach. I always have. I don’t require a lot of hand-holding. But it might not be this way forever. So I don’t want to piss off the people around me that might be holding my hand one day!

Do you have any insight into how your MS could progress?

My doctors give me broad strokes; they lay out what can happen. It’s not to say relapsing-remitting MS can’t turn into progressive—which means you’re in a constant state of flair-ups and your body just deteriorates as a result—if it’s not properly treated or handled. What I do know is that it’s a bit of a role of the dice. I could be great, great, great for years and then it could hit me like a ton of bricks. I have to psychologically prepare myself for that. And, as terrible as it is, you go to bed every night thinking, “Is tomorrow the day? And if it is, what’s the plan?”

What's the most frustrating misconception about MS?

The one thing I get is, “You look great!” I’m like, “Are you saying that because I have MS? What does someone look like that has MS?” That was kind of the reason behind starting You Don’t Know Jack.

RELATED: Top 10 Myths About Multiple Sclerosis

Your daughters are young. How do you talk to them about it?

My 5-year-old [Pearl] sees me take my medication. I have an injectable I take three times a week, so she sees me inject myself and she’ll be like, “What is that? What does that do?” She loves playing doctor so she gets all excited. I think it’s fun for her. But when I explain that Daddy is kind of sick, she’s like, “Oh, OK.” I think as they get older they’ll be able to comprehend it a little bit more. But I’m very active with my kids. We’re always doing stuff, whether it’s going to the beach or park or camping. I try to be as active as possible because there is no guarantee that’s it’s going to be like that forever.

Have they inherited your adventurous side?

Pearl is like a fish, loves the water. I surf a lot so I’m hoping that in the next year or two I’ll get her on a surfboard. Andy is 2 but she is like my little climber buddy. We might get some camping trips in. I’ve been thinking about pulling the trigger and getting an RV. I want to do the whole Pacific Coast with them, go up to Washington. Oh, and they also like cats and unicorns too.

Do you want more kids?

I want like a whole baseball team.

Birth Month and Health

The period of time shortly before and after babies are born is vital to their development and future health: research has shown that everything from a mother’s stress levels and exposure to secondhand smoke, pesticides, and pet dander can affect a child’s risk of illness down the road. But here’s something that you might not expect to have such an effect: The month in which a child is born—or in some cases, conceived.

“The scientific literature goes back almost 100 years linking birth season to almost anything under the sun, from income to life expectancy to height,” says Hannes Schwandt, PhD, an economist at Princeton University’s Center for Health and Wellbeing. But Schwandt cautions that much of the research on this topic has not taken into account factors like the mothers’ socioeconomic status or the length of pregnancy—both of which can affect when a woman gives birth, as well as the health of their baby.

Still, several recent studies (one by Schwandt himself) have found interesting correlations and potential implications for a baby’s birthday. Here are a few surprising finds.

May conceptions and premature birth

Women who get pregnant in May (and are due in the winter) have a 10% higher risk of delivering their babies prematurely, according to a 2013 study by Schwandt and his co-author Janet Curie, PhD. The researchers speculate that high rates of influenza in January and February likely play a role, since it’s known that catching the flu can trigger premature labor in women nearing full-term.

That doesn’t necessarily make May a bad month for conception, though. “In some years, flu season peaks much earlier,” says Schwandt. “In that case, women who conceived in earlier months would be at greater risk.” Regardless, getting a flu shot is a pregnant woman’s best bet at protecting herself and her baby from health risks, now or in the future.

RELATED: 10 Biggest Myths About The Flu

Autumn births and physical fitness

A boy born in November can run at least 10% faster, jump 12% higher, and is 15% more powerful than a child of the same age born in April, according to a 2014 study published in the International Journal of Sports Medicine. Overall, kids with fall birthdays appeared to be more naturally fit than those born during other times of the year.

One possible explanation? The authors suspect that mothers who are pregnant through the summer are exposed to more sunlight and therefore produce more vitamin D, an important nutrient for fetal development. The American Congress of Obstetricians and Gynecologists (ACOG) says that all women—pregnant or not—should get 600 international units of vitamin D per day. Most pregnant woman can get enough vitamin D via food and prenatal vitamins, according to ACOG, so the group doesn’t recommend routine screening for vitamin D deficiency during pregnancy. But if you’re concerned that you’re getting enough, talk your doctor.

Springtime babies and multiple sclerosis

Low vitamin D levels during development may also put babies at increased risk of developing multiple sclerosis later in life. A 2013 Queen Mary University of London study found that vitamin D levels in babies born in May were about 20% lower than in those born in November; May babies also had twice as many autoreactive T-cells, potentially dangerous cells that could later turn against the body’s own immune system.

Previous research has suggested that the risk for multiple sclerosis is highest for people born in May and lowest for those in November, and the study authors believe the “sunshine vitamin” could be involved. They point out that their findings only show an association between vitamin D levels and MS risk—not cause-and-effect—and that more research is needed on the benefits of vitamin D supplementation during pregnancy.

RELATED: 10 Surprising Things That Increase Your Risk of Multiple Sclerosis

The bottom line

Don’t panic if you conceived in May, or dub your kid a future Olympian just because you’re due in November. Any effects that timing does have on a child’s health won’t be nearly as important as other factors you can control year-round—like eating well, avoiding cigarette smoke and alcohol, and getting regular exercise while you’re expecting.

“Unless you have a personal preference, there is no ‘best’ or worst’ month to get pregnant or have a baby,” says Schwandt. “Taking care of yourself and getting proper prenatal care will make a much bigger difference than whether you give birth in January versus June.”

RELATED: Pregnant? Diet Changes to Make Right Now

Could High

By Amy NortonHealthDay Reporter

WEDNESDAY, Dec. 30, 2015 (HealthDay News) — High-dose vitamin D appears safe for people with multiple sclerosis, and it may help quiet the immune system hyperactivity that marks the disease, a small clinical trial finds.

The study, published online Dec. 30 in Neurology, bolsters evidence that vitamin D might benefit people with MS.

But clinical trials are still underway to answer the big question: Does taking vitamin D improve MS symptoms and alter the course of the disease?

The current study shows only that high doses—10,400 IU a day—reduce the proportion of certain immune-system cells that have been implicated in the MS disease process.

“I’m not going to make any claims beyond that,” said senior researcher Dr. Peter Calabresi, a professor of neurology at Johns Hopkins University in Baltimore.

“We don’t have enough data here to guide clinical practice,” he stressed.

Bruce Bebo, executive vice president of research for the National Multiple Sclerosis Society, echoed that caution.

“This study was not designed to look at efficacy against MS. It was too small and too short to do that,” said Bebo, whose group helped fund the research.

Still, Bebo added, the findings are important for other reasons. For one, he said, “they give us some hints about the mechanisms that explain the higher MS risk associated with low vitamin D.”

MS is caused by an abnormal immune system attack on the protective sheath surrounding nerve fibers in the brain and spine. That leads to symptoms such as muscle weakness, numbness, vision problems, and difficulty with balance and coordination.

Typically, MS symptoms flare up periodically, followed by periods of remission. Over time, the disease can cause worsening problems with walking and mobility.

The precise cause of MS is unknown, but researchers believe it involves a combination of genetic vulnerability and certain environmental triggers. Inadequate vitamin D—a nutrient needed for normal immune function—is considered one of the suspects.

That’s partly based on studies showing an association between blood levels of vitamin D and the risk of developing MS. But there is also more-direct evidence, Bebo said. For example, research has shown that vitamin D can reduce the effects of an MS-like disease in lab mice.

The new findings suggest it may alter immune system activity in people with MS, too, Bebo said.

According to Calabresi, the results underscore another point: High doses of vitamin D are probably necessary.

His team tested two doses in 40 adults with MS. Over six months, one group took 10,400 IU of vitamin D a day—about 17 times the amount that the U.S. government recommends for healthy adults (600 IU a day); the other group took 800 IU a day.

In the end, only the high-dose group showed changes in their immune system activity. The largest effect, Calabresi said, was a reduction in cells that produce an inflammatory protein called interleukin-17.

However, the study looked only at certain aspects of immune function. And MS is a “complicated disease immunologically,” Calabresi noted.

He said it will be interesting to see whether vitamin D has additional immune system effects in people with MS, or possibly other autoimmune diseases.

Several clinical trials are now testing vitamin D against MS, including a U.S. study that’s still recruiting patients. The trials are using doses ranging from 5,000 to 10,000 IU a day, Calabresi said.

Without those trial results, he said, it’s too early to recommend that people with MS take vitamin D.

But, he added, since adequate vitamin D is important for overall health, people may want to be tested for deficiency in the nutrient.

With vitamin D supplements readily available, Calabresi also recognized that some people with MS will probably start taking it even in the absence of proof.

He encouraged them to use vitamin D only under medical supervision.

In this study, high doses appeared safe over six months. But, Calabresi said, high blood levels of vitamin D can send blood calcium concentrations soaring, which can cause kidney stones or other problems, such as poor appetite, weakness and constipation.

Bebo agreed. “Always speak to your [doctor] about any medications or supplements that you’re thinking of taking,” he said.

More information

The National Multiple Sclerosis Society has more on the possible causes of MS.


6 People Explain What It’s Really Like to Live With MS

Editor’s Note (Jan. 27, 2016): Jamie-Lynn Sigler appeared on the Today show this morning and spoke about the great sense of relief she has experienced after revealing that she has MS. 

Jamie-Lynn Sigler is finally opening up about a private battle she’s been facing for the past 15 years living with multiple sclerosis.

In a new interview with People, the 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 disease in which the body’s immune system attacks myelin, the protective sheath around nerve cells that helps send messages to the brain and other parts of the body. Common signs of the disease include trouble walking and maintaining balance, fatigue, sensations of numbness or tingling, and vision problems. But depending on which nerves are affected and the level of damage, symptoms can vary widely from person to person, and may not surface right away or progress steadily.

Sigler, 34, told the magazine that she was initially diagnosed at age 20 and went symptom-free “for quite some time.” It was during the last decade that the newlywed and new mom began to struggle with the often unpredictable effects of the disease. “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 MS can be so tricky to understand, we reached out to several individuals who are living with the disease, 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." — Meagan Freeman, 41, family nurse practitioner

It was a “strange” transition 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 thing that has surprised her is how people tend to think of MS patients in two ways: “Either complete and total disability, or a perfectly normal person with a minor illness,” says Freeman, who now blogs for the Multiple Sclerosis Association Of America (MSAA). The reality is that some people can become seriously disabled during flare-ups, but remain relatively functional at other times, she explains.

Fear of the future, however, is something they all share, she says: “It is inescapable with an incurable disease.” To escape the worry, she tries to live by the mantra It could always be worse. “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." — Liz Sagaser, 35, publishing and campaign strategist for a nonprofit organization

“I am not in denial,” says Sagaser, who was diagnosed on Nov. 13, 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. “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, Sagaser has been on the same disease-modifying medication for five and a half years, and has not gone through a clinical relapse.

“I experience neuropathy in my hands and feet, fatigue, word recall issues, and sometimes long-term memory lapses,” she says. “But 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.”

RELATEDCould You Have MS? 16 Multiple Sclerosis Symptoms

"I never imagined I would be 40 years old and living at home with my parents." — Christina Aivazoglou, 40, former personal trainer

Aivazoglou remembers when her days were spent at the gym training clients no wheelchair, no leg brace. Now, with little mobility in the left side of her body, she requires help from an aid and her mom to eat, wash, style her hair, and more. “Although I am very lucky to have them, it sucks,” she admits.

Although she has tried many drugs that failed her, Aivazoglou continues to experiment with different options. In addition to disease-modifying therapy medications, she takes a sleeping pill and uses medical marijuana to help prevent muscle spasms during the night.

But her biggest challenge, she says, is coming to terms with the role reversal she has experienced with her daughter, who is now 10 years old. “I want to be able to drive my daughter to dance, spot her while she does a gymnastics move,” says Aivazoglou. “Instead my daughter is helping take care of me, calling 911 when I fall.”

 

"It's all trial and error in figuring out how our bodies can best cope." —Stacie Prada, 45, 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] book,” she remembers. “I was dumbfounded.”

Today her fatigue is 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 new attitude isn’t to “fight” or “battle” the disease. “That [language] never resonated with me,” says Prada, who also blogs for the MSAA. “Constantly fighting seemed exhausting to me when I was already experiencing extreme fatigue. 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 people don't talk about it, but it does take a toll on your sex life." — 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 helped 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’s 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 dance on the weekends ever since retiring from Radio City in 2002.

RELATED12 Surprising Factors That Up Your Risk of MS

"It can be possible to feel completely great." — Daryl Bryant, 38, founder of a digital marketing agency and author of MS: Living Symptom Free

Fourteen years ago, Bryant began to experience vision loss and eye pain, which “felt like someone was squeezing my eyeball with a wrench,” he says. He saw an eye specialist but was told that everything was fine.

Another year passed 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 the eye to the brain. For many people, it is the 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.

Bryant 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 the disease. Today, Bryant has found success with an MS medication and adjustments to his lifestyle that allow him to manage his symptoms. “I eat a Paleo diet. 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.”

Heavy Coffee Drinkers Show Lower Risk of Multiple Sclerosis

By Amy NortonHealthDay Reporter

THURSDAY, March 3, 2016 (HealthDay News) — People who drink a lot of coffee may have a lower risk of developing multiple sclerosis (MS), a new large study suggests.

Researchers found that among more than 6,700 adults, those who downed about six cups of coffee a day were almost one-third less likely to develop MS than non-drinkers were.

And the link was not explained away by factors such as people’s age, education, or income levels, or smoking and drinking habits.

Still, experts stressed that the findings do not prove that coffee, or big doses of caffeine, fight MS.

Nor is anyone suggesting that people drink more java to ward off the disease, said lead researcher Anna Hedstrom, of the Karolinska Institute in Stockholm, Sweden.

She said the findings do add to evidence that coffee “may have beneficial effects on our health”—but there is no way to make any specific recommendations.

Elaine Kingwell, a researcher at the University of British Columbia, in Vancouver, Canada, agreed.

There could still be other explanations for the coffee-MS connection, she said. Plus, past studies looking at this same question have come to inconsistent conclusions, explained Kingwell, who wrote an editorial published with the study. It appeared March 3 in the Journal of Neurology, Neurosurgery & Psychiatry.

All of that said, there is reason to believe coffee could protect against MS, both Hedstrom and Kingwell noted.

In previous research, scientists have found that caffeine can protect lab mice from developing an MS-like condition—by blocking part of the inflammatory process that damages nerves in the brain and spine.

In humans, MS arises when the immune system mistakenly attacks the protective sheath around nerve fibers in the brain and spinal cord. Depending on where the damage occurs, people can suffer muscle weakness, numbness, vision problems, and difficulty with balance and coordination.

A number of studies have linked higher coffee intake to lower risk of diseases that involve degeneration in brain cells, including Parkinson’s disease and Alzheimer’s. When it comes to MS, the evidence has been mixed, possibly, in part, because many studies have been small, Hedstrom explained.

So, her team looked at two study groups: a Swedish group that included 1,620 people with MS and 2,788 without the disease; and a U.S. group of 1,159 MS patients and 1,172 adults free of the disease.

Overall, people who’d averaged 30 ounces of coffee a day—around six standard cups—were almost one-third less likely to have MS than non-drinkers were.

The results were similar when the researchers looked at people’s coffee habits five to 10 years before their MS symptoms had begun (or, for people without MS, coffee habits during that same time period).

But, Kingwell said, there are issues with relying on people’s recollection of their diet years ago. And if some people with MS had stopped drinking coffee because of their symptoms, that could affect their memory of their earlier habits, she added.

“There is not enough evidence here to suggest that people should drink several cups of coffee per day,” Kingwell said.

Still, she added, the findings are “interesting” and warrant more research. If researchers can figure out why coffee, or possibly caffeine, is tied to MS, Kingwell said, that could give clues about the underlying causes of the disease or possibly lead to new treatments.

More information

The National Multiple Sclerosis Society has more on risk factors for MS.


Amy Schumer Is Showing the World What an MS Diagnosis Is Really Like

Reason #945 that we love Amy Schumer: In an Instagram post this week—a screenshot of a FaceTime call with her dad—the inspiring comedian announced that she had bought back the beloved farm her father lost to bankruptcy.

She then shared a home video of herself as a little girl, wading through a cornfield on the farm, and trying to get her dad—who’s behind the camera—to follow her. In the caption she wrote,”We lost the farm when we lost everything else. But today I got to buy it back for him.”

RELATED: Top 10 Myths About Multiple Sclerosis

The nostalgic clip was filmed years before her father, Gordon Schumer, developed multiple sclerosis (MS), a disease in which the immune system attacks the protective sheath around nerve cells (called myelin), and disrupts communication between the brain and other parts of the body.

Amy was only 12 when her dad was diagnosed with MS. Now that she’s a world-famous comic, actress, writer, and producer, she’s doing everything she can to raise awareness and funds for the debilitating disease.

On social media, she frequently shares photos and videos from visits with her dad, who resides in an assisted living facility and uses a wheelchair. And in the memoir she published this summer, The Girl With the Lower Back Tattoo, she wrote candidly about the challenges of his MS. In one heartbreaking scene, she describes how he lost control of his bowels on a trip to an amusement park with Amy and her younger sister.

The disease is also a central theme in her hit movie Trainwreck. Amy’s character (named Amy) has a father (named Gordon) who suffers from MS and resides in an assisted living facility. Amy and the film’s director, Judd Apatow, used the Trainwreck Comedy Tour to raise more than $176,000 for the National Multiple Sclerorsis Society.

Last year, during an interview with Barbara Walters, Amy brought up the unpredictability of the disease, and how difficult the swings can be: “Some days he’s really good and he’s with it and we’re joking around,” she said. “And some days I go to visit my dad and it’s so painful. I can’t believe it.”

Most people who have MS experience a “relapsing-remitting disease course,” which means they get new symptoms or relapses that last several days or weeks; then enter a period of remission.

Common symptoms of MS include trouble with balance and coordination, spasticity, vision problems, numbness or tingling, and fatigue. But the effects of the disease vary widely, depending on the degree of nerve damage, and the nerves that are affected. No two cases are the same.

There is currently no cure for MS, only treatments that can help slow its progression and manage symptoms—which is why the disease can use all the attention it can get. However, the good news is that there are now more treatments to help prevent MS-related damage than ever before, and not everyone with MS will need a wheelchair. (Read the Top 10 Myths About MS for more details.)

Advocates like Amy and Jamie-Lynn Sigler, who revealed her diagnosis earlier this year (and is one of the many celebrities with MS), are highlighting just how devastating MS can be, as researchers work to find ways to improve the lives of people who are living with the disease.