Category: Health

By Carolyn Deming Glaviano, as told to Alexandra Benisek

I was diagnosed with multiple sclerosis on my birthday. I had some eye pain and went to my optometrist, who then told me I needed to see my ophthalmologist. After being in the eye doctor room for a few hours, and seeing many doctors, a resident told me they think I have MS. She suggested I walk to the emergency department and admit myself into the hospital for an MRI.

There was a moment when I was in shock. I kept thinking “no, really, I’m just here for eye pain.” I called my colleague, Cassie, to tell her the situation. She ended up bringing saltines, ginger ale, and almonds and stayed with me while I was admitted into the hospital. That day, she catapulted to this different status of friend, just by being such a wonderful person.

How MS Affected My Friendships

One of the things every individual with a chronic illness needs is another person to hear, to listen, and to discuss things with. My friend and roommate, Sarah, was with me at appointments, not only to be my advocate, but to hold witness to what was being said. Doctors usually want people to leave during a spinal tap, but Sarah didn’t leave. She held my hand and petted my hair during the procedure.

Through my diagnosis, I’ve learned what I need from my friends. For example, Cassie was not going to let me be alone at the hospital. It was a professional friendship prior to that. But we crossed over about 100 barriers that day, because I didn’t want to be alone and she rose to the occasion.

My other long-distance friend is very good with medical things and wanted updates. So, Sarah became a central point of focus for people in my life so that I didn’t have to update them. She connected everyone and answered questions.

But that’s just one side — the diagnosis and support side. Then there’s the physical limitations. As my disability has progressed, I’ve had changes in my walking, stamina, balance, and even my fatigue levels. Fatigue is so debilitating, and sometimes I have bad movement days, so I might have to cancel plans. Until you or someone close to you encounters this, you don’t realize how hard it is to get around.

My friends never make a big deal when I have to cancel plans. They don’t take it personally or make me feel bad. Because I’m already disappointed — I wanted to see them. It’s not me being flaky. It’s me having to make a physical determination of what I am capable of, and a cost-benefit analysis of what I need to do today, what I need to do tomorrow, and what I need to do for the rest of my week.

How MS Affected Me and My Family

I have an incredible family. But at first, I worried how my parents were handling it. The parent-child relationship did a massive swap. I thought I was going to be taking care of my parents as they got older, but that hasn’t happened. They’re still very much taking care of me.

I had to work a lot on communication. At first, I didn’t know how to convey the ways in which I needed my mom to help me. I wanted her to be a mind reader. She also didn’t know how to take hard information and know what to say right away. I wanted her to have an instantaneous and perfect reaction, but she needed time to think.

Now, we’re in a really great space. But that’s taken time. It’s so important to be open with communication. We had to come together to figure that out.

Even though my family is super supportive, I’ve still had to say, “please don’t say that to me,” or “this is how I need you to help me,” or ”can we do x instead of y?” That takes energy, effort, and is a learning curve.

How MS Affected My Marriage

My boyfriend, now husband, and I started dating long-distance. When I was diagnosed, we hadn’t been together that long. He was supposed to be in a wedding when I went into the hospital. He called up his buddy and said, “I can’t be there.” He changed his flight and came from Atlanta to Chicago to be with me.

He friended all of my friends on Facebook and did a “birthday redo,” since I had been diagnosed on my birthday. They bought alcohol and food and did a whole birthday do-over several days after I got out of the hospital. He was never scared of my diagnosis. I don’t know how I got so lucky. Because I know a lot of people would run the other direction, not knowing what the future would bring.

Today, I have mobility issues and we have many stories in our house. So, he’ll carry my glass of water, my book, and my phone so I can concentrate on getting up the stairs. I can’t walk our dog anymore, so he takes care of that.

We have had to shift what and how we do things. Now, we do a lot of check-ins. On some bad days, I’ve had to ask, “do you want to hear this?” or “are you in a headspace to hear this? If not, that’s OK.” I don’t feel like he’d be turning his back on me. Because his mental health and ability to support me also have to be OK.

I think this idea that your spouse is supposed to be everything puts too much the pressure on them, it’s unfair. On certain days, I have another person help, like a friend.

Talking to Others About MS

During previous jobs, I was not loud and proud about MS. I felt unsure if I wanted to acknowledge that I have, what is now considered, a disability. I know that people are not unbiased, so I was terrified to even self-identify.

In many cases, if you look fine, there’s also a stigma. Prior to my physical limitations, I had an invisible illness. I would wonder if I had to try to look sicker than I am to prove that I have MS. That’s a burden, especially in the workplace. So, I swung the other way. I’d act like everything was fine. My professional life and persona are very important to me, so my energy went to that. And then my recovery was on the weekend. But I realized it wasn’t fair that my job got all the good energy.

It’s a lot of therapy and a lot of talking to bosses. At every new job, my boss eventually knew about my MS. But it wasn’t off the bat. It was several months into that job that I told them.

When I talk about MS with others, I love using the phrase “dynamic disability.” I will communicate when it’s a good energy day or when it’s a bad mobility day. At my current job, I have a really understanding leadership team. If they’re going to have an in-person meeting, they give me the choice to come in or not. And that’s awesome.

But in past jobs, I’ve had some issues, like getting proper disability parking. There are mechanisms to help people with MS, but it’s not a seamless process, it’s not always easy to understand. But there are things you can do.

My distinct sound bite is, “If you don’t ask, you don’t get.” What’s the worst thing that can happen if someone says no? You still have the self-assurance of knowing that you advocated for yourself. That means your energy, your boundaries, your work-life balance, your health, your doctor, and the people in your life — those are choices that you have.

There are some magical people in this world who never need to be told how to help, but most people just want some direction. The support you get from work won’t be the same support from your family, or from your friends. But most people have the ability to offer something.

Psoriasis treatment has come a long way. New medications like biologics have helped more people achieve clearer skin.

 But everyone with psoriasis is different. What works for one person won’t always help someone else. A certain medication might clear your skin for you for a while, then stop working. Some may have side effects that you find bothersome. 

Women with psoriasis say it can take time and experimentation to find what works best for you. That might mean medications, lifestyle changes, or home remedies. It can also mean adopting a new mindset — to stress less, reach out for support, and practice self-acceptance.    

One Biologic After Another

Tami Seretti was diagnosed in 1996, when many doctors still treated psoriasis like a skin condition instead of an autoimmune disease. At the time, topicals — medications you apply to the skin — were the main treatment.

The first one she tried was a corticosteroid oil applied to the scalp.

“You had to put it in, wear a shower cap all night, and wash it out in the morning,” Seretti says. “It was messy. I ruined nightgowns and sheets. And it didn’t really work that well for me. It pulled the scales out, but it pulled my hair out with it.”

She also tried other corticosteroids and all kinds of greasy lotions.

Then she started on disease-modifying drugs. She’s tried many biologics, drugs that block the part of the immune system that cause those scaly plaques.

One worked well for her — for a while. “I was in total remission. But when it stopped working, it really stopped working,” she says. Two years ago, her doctor suggested she switch to her current medication.

“It started working in about 10 days, and it’s been working ever since. I went from 80% covered to 15% covered [in psoriasis].” She’s been able to grow her hair past her shoulders for the first time in her life.

Seretti also uses two topicals, a cream and a scalp solution. And she uses an ultraviolet B (UVB) light wand at home.

In addition, she finds relief from soaking in an Epsom salts bath. “It softens up all the scales and it relaxes me,” she says.

“Psoriasis-wise, I’m doing fantastic. I could not be happier,” Seretti says. “I don’t think twice anymore about wearing flip-flops, sleeveless tops, or shorts.”

She says she also doesn’t have to cancel social plans anymore because she’s too uncomfortable to get dressed. “This freedom is incredible.”

Medication and Stress Relief

A tiny patch of itchy skin on the back of her head was Melissa Withem-Voss’s first symptom. What she thought was stress turned out to be psoriasis, which her doctor diagnosed in early 1996.

She’s tried many medications over the years, including steroids, methotrexate, and even injections of a  compound containing gold.  Finally, she and her doctor found a biologic that worked for her. “After 21 years of not being 100% clear, that was the first thing that cleared me.”

But biologics can eventually stop working. That’s what happened to Withem-Voss after about 3 years on one medication. Now she’s on her 4th week of a different biologic drug. “So far, it is helping,” she says.

As a chef, Withem-Voss has experimented with diet, too. She finds that eliminating bread and sugar helps her skin. “I haven’t found that any one diet has ever solved it,” she says. “But I feel better.”

She also meditates for a half hour before bed each night to tame the stress that causes her psoriasis to flare up. “It keeps me calm. It keeps me relaxed,” she says.

Over time, she’s learned to live with her condition. “I used to hide. I used to cover myself,” she says. “I have come to accept it about 90%.”

Elimination Diet

When Jessica Lorion noticed tiny spots on her legs and stomach in 2011, she thought they were bedbug bites. She was an actor living in New York City, so bedbugs wouldn’t have been far-fetched. But when the spots didn’t go away, her doctor diagnosed her with psoriasis.

“I was covered from head to toe. From the top of my scalp all the way down to my feet,” she says. She tried a steroid ointment before going on a biologic drug. “After about 6 months, I was significantly clearing,” she says.

Eventually she was also diagnosed with psoriatic arthritis. Her doctor put her on the anti-rheumatic drug methotrexate, which helped with both conditions.

But in the back of her mind, Lorion was worried. She wanted to start a family, and methotrexate isn’t safe for a growing baby. Her rheumatologist told her she could go on a pregnancy-safe biologic, but “I was scared,” she says. “You hear these commercials with all these side effects.”

Lorion started to experiment with food. After doing some research, “I made the decision to go on an elimination diet, to make my body as strong and healthy from the inside out as possible,” she says.

For the first 30 days, she followed a strict regimen. No gluten, dairy, caffeine, processed foods, sugar, grains, or most oils. Then she slowly started reintroducing foods. Today, she still avoids gluten, dairy, artificial sweeteners, and processed foods.

She says the diet has helped her wean off most of her medications. “At this point, I’m at the lowest dose,” she says. “I just have a little bit [of psoriasis] on my elbows and heels, but it’s under control.”

She’s started a podcast, called Mamas in Training, to share her journey with an autoimmune disease and help other moms-to-be advocate for themselves.

“It’s my way of helping others and helping myself stay in a positive mindset,” she says.

Medication — and a Strong Support System

Being outdoorsy, Vickie Wilkerson mistook her first psoriasis patch for poison ivy. That was 18 years ago. Back then, topicals like coal tar were her main treatment option.

“In my opinion, the coal tars are the worst ever. The smell, the greasiness — it messed up your clothes. It was terrible,” she says.

The psoriasis eventually spread to so much of her body that her doctor put her on methotrexate. But the side effects were “horrible,” she says. “I’d be very nauseous. I couldn’t even try to lift a glass of water. I was so fatigued.”

Then she tried biologic after biologic. One cleared her hands but not the rest of her. Another worked for a year and a half, then stopped. A third helped her psoriasis, but she developed stomach problems while on it.

On her latest biologic, she says, her skin is almost completely clear. “In the 18 years I’ve been battling psoriasis, I’ve never once been clear. To finally be on something that is working is just amazing,” she says.

She also watches what she eats and listens to music to relax. And she credits a strong support system with helping her through the most difficult times. Her biggest sources of support are her husband, her children, and the people she’s met through the National Psoriasis Foundation.

“I turn to them when things are bad or I’m in a flare because they understand what I’m going through,” she says.

If you have psoriasis — or know someone who does — you’ve probably spotted the telltale flakes on your carpets, couches, car seats, and clothes.

“The outer layers of the skin grow much faster than normal,” says David Pariser, MD, professor of dermatology at Eastern Virginia Medical School. “As the layers peel off, that’s what makes all the scale.”

Psoriasis flakes look a lot like dandruff. Because they come from your scalp and body, they can get everywhere.

The flakes can be very embarrassing. It’s a part of the disease you can’t hide.

Over more than 4 decades of living with psoriasis, John Latella estimates he’s lost more than 300 pounds of scale. The flakes were a big issue when he had to travel for work.

“If I went out to dinner with somebody and reached across the table and brushed something, I always worried the scales would fall off,” he says.

At hotels, he’d wake up in the morning to find the bed full of flakes.

“I was embarrassed to leave it like that because I didn’t want the maid to have to clean it up.” He says using a moisturizer regularly in both the summer and winter helps keep his skin soft, supple, and less scaly.

Heavy flaking isn’t as common as it once was. Treatments like biologic drugs are available to control psoriasis.

“If you have so much flaking that it’s lying around the house, you should go back to your dermatologist,” says Carolyn Jacob, MD, founder and director of Chicago Cosmetic Surgery and Dermatology. “Biologic medications can free your skin of the inflammation, which causes the flaking in the first place. They’ve completely changed the entire way of treating the disease, and they allow people to have normal lives so they’re not vacuuming every day.”

It’s important to get inflammation under control, she says, not just to improve your skin, but also to prevent damage to your joints and blood vessels.

Latella says biologics worked for him, helping to reduce his scaling “to practically nothing.”

If you’re on a treatment but still dealing with flakes, there are some easy ways to tidy up.

1. Fire Up the Hoover

“Vacuum every other day,” Jacob suggests.

It’s the easiest way to clean up psoriasis flakes. It’s important, too, because scales can build up in carpets and attract bugs.

“Dry, flaking skin that comes off ends up being food for dust mites,” she says.

A hose with a rubber edge will pick up the smallest flakes. Buy a portable hand-held model for your car and travel. And if you get tired of pushing the vacuum, a robotic one can do the work for you.

2. Go Deep

Psoriasis flakes can go deeper into your carpets than your vacuum can reach. When Latella tore up the wall-to-wall carpeting in his home, he was surprised by what he found.

“The scales had worked their way down through the fibers of the carpet. It was just powder underneath,” he says.

Have your carpets deep cleaned every 6 months to pick up the scales your vacuum cleaner misses.

3. Sweep Them Away

Hardwood or linoleum floors make it easier to clean up flakes. You simply sweep them up with a broom or brush. A broom with softer bristles may make it easier to pick up the scales, Latella says.

4. Scrape Them Off

Latella found his own solution for flakes that covered the bed while he slept.

“I made a hard card out of plastic. In the morning, I’d scrape the scales into a pile and throw it out.” Any hard-edged surface will help you collect the flakes more easily.

5. Roll Them Off

Scalp psoriasis can dust the shoulders of your shirt, much like dandruff. A lint roller or brush is an easy way to remove flakes that fall on your clothes.

“These scales are not sticky,” Jacob says. “They’re not going to stick to your clothing.”

She also suggests wearing light-colored clothes to hide any flakes that do fall.

6. Go Long

If your arms and legs shed a lot, wear long pants and long-sleeved shirts with buttoned cuffs when you go out. Your clothes will catch the flakes before they fall.

7. Wash Them Off

Wash your sheets and clothes more often to get rid of the scale buildup, Jacob suggests. Use a gentle detergent that won’t irritate your skin.

8. Filter Them Out

Install an air filter in your home to trap psoriasis particles. This will keep the flakes from floating in the air. Or use a vacuum cleaner with a built-in filter.

Idiopathic hypersomnia (IH) is a rare neurological disorder. Treatment can help, but there’s no cure. You may snooze upwards of 9 hours a night without feeling refreshed. You may fight to wake up in the morning. Your sleepiness may persist or get worse, even when you take lengthy naps during the day.

If you live with IH, you’d probably like to know what’s causing your symptoms. Unfortunately, that’s not  something experts have figured out yet.

“Literally, the name idiopathic hypersomnia means you’re sleepy and we don’t know why,” says Sabra Abbott, MD, assistant professor of neurology and sleep medicine at Northwestern University Feinberg School of Medicine in Chicago.

Lots of sleep specialists are trying to solve the IH puzzle, including Lynn Marie Trotti, MD, associate professor of neurology at Emory University School of Medicine in Atlanta. Sleep disorders tend to run in families, so your genes likely have something to do with it. But Trotti says she and her colleagues still don’t know the main source of all this extra sleepiness.

“The big mystery really is what causes idiopathic hypersomnia,” Trotti says.

Theories Behind Idiopathic Hypersomnia

We don’t yet know why people with IH are so sleepy, or why the disorder causes cognitive symptoms like brain fog, memory troubles, or poor attention. But thanks to ongoing research, Trotti and Abbott say there are some emerging clues, including: 

Something triggers your GABA-A receptors. These are neurotransmitters that inhibit your central nervous system. Drugs like benzodiazepines can activate them. Doctors use these kinds of meds to treat anxiety and insomnia.

Trotti says people with IH sometimes have higher levels of natural benzodiazepines in their spinal fluid. “And the fact that there’s a difference suggests that (GABA-A receptors) might be related to the sleepiness in idiopathic hypersomnia,” she says.

There’s ongoing research into this theory. But Abbott says the idea is that something in your body acts like an all-day sleeping pill.

“That’s helpful for when you’re trying to go to sleep, but not when you’re trying to be awake during the day.”

Your circadian rhythm is out of sync. Everyone has a natural sleep-wake cycle. If you have IH, you might stay up late and have a lot of trouble waking up early. This “kind of suggests that there might at least be a component of a circadian timing issue,” Trotti says.  

Abbott says she sees a lot of overlap between IH and something called delayed sleep-wake phase disorder. These are your natural night owls who fall asleep and get up later, she says. While the average circadian rhythm for most of us is just a little bit longer than 24 hours, she says this group operates differently.

“It’s sort of like they’re living a 25-hour day,” Abbott says. “Their sleep window is longer because their internal day is longer. They’re always playing catch-up.”

Chronic Fatigue vs. Idiopathic Hypersomnia

Since IH is a bit of a mystery, it can go undiagnosed for a long time. It can seem like other conditions. That might have something to do with how we think and talk about sleep. You might hear people use terms like “fatigue” and “sleepiness” interchangeably, but they aren’t the same thing.

Here’s how Trotti explains the difference: Hypersomnia means you either sleep too long or you fall asleep when you shouldn’t, such as taking naps during the day. Fatigue, on the other hand, is a weariness or lack of energy that doesn’t tend to raise your sleep time.

With that said, Trotti says about 20% of people with hypersomnia also have chronic fatigue syndrome. But a careful history of your symptoms can help your doctor figure out what’s going on.

They might ask:

• What do your night and day schedules look like?
• How much time do you spend asleep?
• How much time do you spend resting but awake?
• How much time do you spend trying to function while tired?

Sleep tests are also helpful. When it comes to hypersomnia, your doctor will see if:

• You fall asleep fast during a daytime nap
• You sleep more than 11 hours in a 24-hour period

Trotti says you wouldn’t expect the above symptoms if you have chronic fatigue syndrome without a hypersomnia disorder.

Where Is Research Headed?

Abbott says there’s a lot of interest in the GABA hypothesis. Most ongoing research is in that area because some anti-GABA drugs can reverse symptoms in some people with IH.  In the future, there may be more drugs like this made specifically for IH.

“It’s a disorder we still don’t know a lot about and don’t have great treatments for,” Abbott says. “But as I tell my patients, there are people actively researching it. Hopefully, 5 or 10 years from now, we’re going to have better answers in terms of what causes it and what treats it.”

Idiopathic hypersomnia (IH) is a sleep disorder without a cure. It’s not well-understood. Even experts don’t know what causes it.

Your sleepiness might get in the way of your daily life. When that happens, you might find that people around you don’t get how hard your symptoms are to manage.

But remember that IH is a medical condition. It’s not your fault.

“It’s really important that people realize they are not their illness,” says Lynn Marie Trotti, MD, associate professor of neurology at Emory University School of Medicine in Atlanta. “Their illness is a thing that has happened to them.”

Your doctor can help you come up with a treatment plan. You might need medication, talk therapy, or lifestyle changes. It can be a challenge to adjust to life with IH. But there are strategies that can help.

Make Sleep a Priority

Most adults need about 7 to 9 hours of sleep every day.  But people with IH are different.

“They can sleep more than 11 hours every single night,” says Sabra Abbott, MD, assistant professor of neurology and sleep medicine at Northwestern Feinberg School of Medicine in Chicago.

You may not feel very awake even if you sleep a lot. But you still need to get a good night’s rest. The effects of not getting enough sleep will likely hit you harder than someone who doesn’t have IH.

“Sleep is less of an optional thing,” Abbott says. “Not that sleep is optional for anybody, but [people with IH] are going to be much less likely to be able to function well if they [stay up late] and only get 5 to 6 hours of sleep.”

Get Help at Work and School

Abbott says she knows some people with IH who’ve tried all kinds of alarm clocks, yet they still oversleep.

“We’ve gone through all the technology that’s out there: the alarm clock that jumps off the table and rolls across the room, the alarm clock that requires you to do math equations to turn it off.”

If you have trouble waking up in the morning, Abbott says you should put some workplace accommodations in place. That could be a flexible or later start time or a conversation with your boss to raise awareness about IH. It’s important for your employer to know your tardiness is due to a medical condition, she says, not “laziness or irresponsibility.” 

The same goes for school. If your child has IH, their teacher or an administrator should be aware of their condition. They might be late sometimes because they “literally couldn’t wake up,” Trotti says.

IH can affect learning in other ways. Trotti says it can cause symptoms such as brain fog, poor memory, or trouble concentrating. So when it comes to longer classwork, she says it can be really helpful for people with IH to get extra time or breaks.

“I have [people] who need to stand up during prolonged classes or tests to help them stay awake,” she says. “Sometimes people will have a small snack. Anything to try to maintain alertness.”

Try Behavioral Therapy

Cognitive behavior therapy (CBT) is a type of talk therapy. The goal is to change unhelpful thoughts and behaviors to boost your quality of life. These techniques should fit alongside other kinds of medical treatment for IH.

CBT might work for you in a few different ways. It might:

Help reframe your thoughts. Abbott says many people with IH “spend their whole lives being told, ‘Oh, you’re lazy; you don’t try hard enough; you’re not doing the right things.’” She says it can be helpful to think about IH as a biological disorder. That’s something a counselor can help you do.

Ease anxiety and depression. There’s plenty of evidence that CBT can ease mental health symptoms for all kinds of ongoing illnesses. That’s good news because “there’s a lot of overlap between almost all sleep disorders and anxiety and depression,” Abbott says. “As you probably know, if you don’t sleep well, you don’t feel very well. And if you don’t target one, then the other one is going to get worse.”

Manage your time. Psychologist Jason C. Ong, behavior sleep medicine director for Nox Health and adjunct associate professor of neurology and sleep medicine at Northwestern Feinberg School of Medicine in Chicago, created a pilot program called CBT for hypersomnia (CBT-H). His early research shows that people with IH can get more done while sleepy when they break up their day.

“People with hypersomnia might not be able to approach the day like others do — in one big chunk — because they get sleepy much faster,” Ong says. “By splitting up the day into smaller chunks of time, it becomes more manageable and easier to take corrective action.”

Ong’s CBT-H program isn’t widely available just yet, though he says some therapists are using it. But based on his research, you should: 

• Keep a diary of how you spend your day.
• Rate how sleepy you are throughout the day.
• Divide your day into blocks: morning, afternoon, and evening.
• Find ways to manage your energy during those smaller chunks.

Ask your counselor about ways to recharge and stay alert. That might include:

• Medication
• Exercise
• Light exposure during the day
• Relaxation techniques, such as mindfulness

Unlike people with narcolepsy, experts don’t suggest daytime naps for people with IH. In fact, if you do take a nap, you may get “sleep drunkenness” afterward. That means it’ll be really hard to wake up or you may get a strong urge to go back to sleep.

Educate Those Around You

IH can feel like you’ve taken a sleeping pill that never wears off. But people without a sleep disorder may not grasp what that really feels like for you. That’s because “sleepiness is the sort of thing that every human being has experienced at one time or another,” Trotti says.

“It’s easy for people without hypersomnia to say, ‘We all get sleepy. Just suck it up. Have some coffee and take a nap.’”

You might be able to shed some light on your symptoms if you bring your loved ones to your appointments. Your doctor can go over why everyday strategies don’t work for you, and they can explain how your sleepiness isn’t something under your control.

“When I have the opportunity in that setting, I try very hard to make it clear that this is a disease that has happened to someone,” Trotti says. “This is not something that someone is doing to themselves.”

Find Support

You might feel less alone if you connect with others who know what you’re going through. “Especially since people who are diagnosed with idiopathic hypersomnia — it’s something they’ve never heard of before,” Trotti says.

Search for support through national organizations such as the Hypersomnia Foundation or online through social media. Ask your health care provider or social worker if there are groups in your area that can help.