Tag: myasthenia gravis

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Patient communities

Never Say Die

Vickie Henderson refused to give up on finding the care she needed.

Vickie Henderson is the kind of person you want to have on your team if you want to win. She’s driven. She gives it her all. And she never gives up. But seven years ago, that never-say-die attitude became a liability for her.

Vickie, who is an obstetrician/gynecologist, started noticing her eyes weren’t focusing quite right, especially when she was tired. She told her eye doctor, who kept adjusting her contact lenses, trying to compensate for the blurred vision, but it was never quite right. At home, she would go to bed early, not because she was sleepy, but because she literally could not keep her eyes open.

As it turned out, she had ocular myasthenia gravis (MG), a chronic autoimmune disease that affects the muscles that move the eyes and eyelids. It was a huge surprise, but she refused to see it as a setback. She was training for a five-day, two-hundred-fifty-seven-mile bicycle ride across the state of Missouri, and she was pushing herself. She couldn’t let up now.

“One thing I learned is, if you push MG, it pushes back,” Vickie says. “Of course I pushed it, and six weeks after my diagnosis—just days before the race—it progressed to generalized MG.”

That day of reckoning came at the worst possible time: when she was in the operating room performing a Cesarean section. The muscle weakness of MG started affecting her hands. Still, she kept pushing herself until not only was she unable to hold the instruments properly, but her legs started buckling and she had trouble breathing because her diaphragm was getting weak.

“I was a surgeon in an operating room one minute, and the next I was a patient in a wheelchair on my way to the emergency department,” she says.

Vickie was sent to a larger medical center where she could receive more advanced care. But the neuromuscular specialists at the tertiary care hospital couldn’t figure out what was wrong with her. Even though she already had a diagnosis of ocular MG, she was seronegative. This means that, like 10-20% of myasthenia patients, her bloodwork did not show acetylcholine receptor antibodies. Because this diagnostic test was negative, the doctors didn’t believe her profound muscle weakness was caused by MG.

“They pretty much accused me of faking it,” she says.

She was fifty years old and, thanks to her training for the bike trip, she was in extremely good physical shape. She could do 80 pushups and bike a hundred miles in one day. So when they tested her for strength, she crushed it. But one of the hallmarks of MG is “fatigable” weakness that sets in after you’ve been using the muscle.

“They didn’t test me for fatigable weakness,” she says. “Doctors would come in and they would have me resist, do straight leg raises, do an arm curl. But when they left the room, I couldn’t even get my fork to my mouth. And even if I could, I couldn’t chew my food, because I had weakness in my jaw. So they didn’t take me seriously.”

Talking to support group leaders from the Myasthenia Gravis Foundation of America (MGFA) was one of the things that helped Vickie find her footing again. These were the myasthenia experts she needed, because they too lived with the disease. Not only were they very knowledgeable about how she needed to take care of herself, but they believed her. They reassured her that she was not crazy.

Buoyed by this support, Vickie’s never-say-die attitude became a force in helping her to advocate for herself. She searched both locally and beyond for a doctor who would listen to her and treat her appropriately. She finally found a myasthenia doctor who believed her, but he was 1,000 miles away. This neurologist did electromyography (EMG) studies to measure the electrical activity of her muscles and, backed by the abnormal results, was able to accurately diagnose and treat her.  

Now Vickie speaks out for rare disease patients everywhere, urging them not to give up until they find the care they need. She’s a powerful motivational speaker who uses stories and humor and her own experience to also urge her physician colleagues, even when they don’t understand, to trust their patients and believe their story.

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Health Information IG Therapy Patient communities

Choices: IVIG versus SCIG

Good. Better. Best.

Many patients with autoimmune disorders and primary immune deficiency diseases depend on regular infusions of immune globulin (IG) to keep them healthy. For most of the nearly four decades since immune globulin therapies have been available, patients have had only one viable option for how this treatment was given. It was only available as an intravenous (IV) infusion.

Since 2006, however, when the first IG product was approved for subcutaneous (SC) administration, patients have had a choice about how they received their treatments. Both products are considered equivalent in terms of efficacy, but there are lots of other factors that may make one preferable over the other. Providers usually have their own sense about how IG should be administered, but we asked IG users for their thoughts on the pros and cons of each option.

Convenience is the biggest factor in which route patients prefer. Ironically, both IV and SC users think their choice is most convenient.

Rebecca, for example, has been getting IVIG for 12 years after being diagnosed with common variable immunodeficiency (CVID). She speaks for many when she says, “I like that I only sacrifice one day every three weeks for treatment.”

The convenience of once-a-month infusions with IVIG comes at the expense of independence, though. IVIG poses higher risks, because it goes directly into the vein rather than under the skin. So it must be given under a nurse’s supervision, whether that is in the hospital, an infusion center, or at home. This means it also has to take place on a schedule that may not always be convenient.

Those who use SCIG usually take their infusions once a week rather than once every three to four weeks or so. Still they prefer the control they have over when they infuse, because they do it themselves. As Brandina, who has myasthenia gravis, says, “I love that I can administer it myself. The treatment days are flexible, and I can take the medication with me, so I don’t have to plan my vacation around treatments.”

Infusing once a week is also inconvenient for some SCIG users, but for most this is a minor drawback. As Jen, who has specific antibody deficiency, says, “I absolutely love SCIG. There are so many more pros that I could list and only this one con.”

Getting infusions at home, whether it is IV or SC, is also a convenience. This has become especially important since the COVID-19 pandemic has made it less desirable to go to a healthcare clinic. Brynne, whose six-year-old daughter uses IVIG for juvenile dermatomyositis (JDM), was grateful when her overnight hospital infusions were changed to in-home infusions because of coronavirus restrictions.

Making the most of infusion time is something IVIG users have worked into their lives. Sitting in an infusion center or even hanging out at home with a nurse for six to eight hours or more can be a huge inconvenience, but it doesn’t have to be wasted time. Dana, who has dermatomyositis, likes IVIG, because it forces her to take time for herself and relax. And Robin, who has CVID, uses the time to crochet.

Mary, whose husband has myasthenia gravis (MG), prefers to get his IVIG at the hospital infusion center for other self-care reasons. “He loves the heated, vibrating recliner,” she says. “And they provide snacks and lunch.”

Adverse effects can be more of a problem with IVIG. In fact, this is often the reason patients switch to SCIG, which has far fewer reactions. Symptoms can range from fatigue, fever, flushing, chills, and ‘‘flu-like’’ symptoms to more life-threatening reactions like anaphylaxis (severe allergic reaction) and blood clots.

The most frequent side effect is headache, which can last several days and be more severe than a migraine. Some, like Lola, who has Sjögren’s syndrome, even get aseptic meningitis (inflammation of the membrane covering the brain) after infusions. This causes debilitating headaches, dizziness, and other symptoms.

Scar tissue and knots of fluid under the skin from subcutaneous infusions was a drawback for those using SCIG. These knots usually disappear within a few hours, though, and any redness or swelling at the injection site usually decreases over time.

Pain from being stuck with needles is not an insignificant side effect, regardless of whether it’s IV or SC. Whether it’s having to stick oneself multiple times or whether it’s having difficult-to-access veins, nobody likes to feel like a pincushion.

This can be especially challenging for children. Nancy’s nine-year-old daughter has JDM and receives IVIG at a pediatric infusion center. She says having ultrasound to find and insert the IV needle makes a world of difference for her daughter. Being spoiled by the nurses also takes some of the sting out of the whole ordeal.

Fluctuations in therapeutic effect is another reason many people switch to SCIG. An IG dose is mostly metabolized by the body over about 22 days, whether it’s given IV or SC. With IV infusion the dose reaches its peak immediately and dissipates over the next three to four weeks. This means that some patients will feel their symptoms returning as IG levels in the blood go down.

“As I got closer to my next treatment date, I would start to feel the effects of needing my next treatment,” says Karon, who has MG. “After I received it, I could tell I had just received a boost and had more energy.”

Giving IG under the skin makes the blood levels rise more slowly. And because SCIG is given more frequently—usually weekly—IG levels in the bloodstream fluctuate far less, so patients don’t feel that fatigue and other symptoms returning.

Whatever you decide about IG therapy, Lea, who has used IVIG for 22 years to treat CVID, offers this important advice: “You have to listen to your body and watch how it reacts to everything and try things until they work for you.”

For those who would like to learn more about IVIG or SCIG, please contact the CSI Pharmacy advocacy team at [email protected].

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Health Information

Get Your Flu Shot Now

Dale wearing blue gloves giving a flu shot to a patient.

For some, getting a flu shot is just part of the fall routine every year. Immunization against the virus that causes influenza prevents millions of people from getting the disease, makes the disease less severe if you do get it, and can prevent death from severe disease and its complications. According to the Centers for Disease Control and Prevention (CDC), influenza causes an estimated 12,000 to 61,000 deaths every year in this country.

This year, because of the COVID-19 pandemic, physicians and public health officials say it’s even more important that everyone over the age of six months get a flu shot. This is especially important if you have an underlying health condition that makes you more at risk for developing complications if you get the flu. While the influenza vaccine will not prevent you from getting COVID-19 (researchers are still working on a vaccine for this different virus), it will help you avoid getting seriously sick with or—heaven forbid—dying from the flu. And the fewer people who get the flu, the more it saves healthcare resources that are still urgently needed for treating COVID-19 patients.

Those who are at high risk for flu complications are also at greater risk for getting COVID-19 and having serious outcomes. If you have an autoimmune condition or immune deficiency disease, such as myositis, myasthenia gravis, pemphigus and pemphigoid, chronic inflammatory demyelinating polyneuropathy (CIDP), and primary immunodeficiency (PI), this means you. You are at a much greater risk for getting sick with the flu and at greater risk for developing complications like pneumonia if you do. If you have heart disease, cancer, or diabetes, getting the flu can also make these conditions worse.

Getting the flu vaccine, however, is not a straightforward decision for some who have these conditions. For example, some people with a history of Guillain-Barré Syndrome (GBS) may have developed this form of muscle paralysis after receiving an influenza immunization. According to the GBS|CIDP Foundation International, the association between GBS and flu vaccines is inconclusive, but they suggest these individuals avoid the vaccine in the future. If you have had GBS, especially if it developed four to six weeks after getting a flu shot, you should talk with your doctor about the risks and benefits of getting the vaccine again.

Another consideration is the aerosol form of the flu vaccine. This is a live attenuated (weakened) influenza vaccine that is given through the nose. While the injected vaccines are made with inactivated virus, the nasal spray is made with live organisms that have been weakened but are still able to activate the body’s immune response against the disease.

The intranasal vaccine is not recommended for those younger than two, older than 50, or those who have a weakened immune system, including some patients who take immune suppressing medications. If you care for or live with someone who is immune compromised, you should also avoid the nasal spray. And if you have an underlying medical condition that puts you at risk for developing severe complications from the flu (such as chronic lung disease, heart disease, kidney disease, liver disorders, neurologic and neuromuscular disorders, blood disorders, and diabetes), it’s important to check with your physician before taking the nasal flu vaccine.

According to the Immune Deficiency Foundation, those with certain forms of immune deficiency (common variable immune deficiency [CVID], severe combined immune deficiency [SCID] or Bruton’s agammaglobulinemia) are unable to develop protective immunity following vaccination. This means their bodies don’t have the infrastructure to develop the immunity needed to keep them from getting sick, so vaccines will not do them any good. In fact, for individuals with these forms of PI, live vaccines—including the influenza nasal spray—may put them in danger of developing severe disease.

The only reason not to get a flu shot is if you have a severe, life-threatening allergy to the vaccine or any of its ingredients. This might include gelatin, certain antibiotics, or other ingredients. If you get hives when you eat eggs, studies have shown that most times you can still get the flu shot. If you have a more serious reaction to eggs or you are worried about this, you should of course talk with your doctor. Egg-free alternative vaccines are available.

The CDC has more information about seasonal influenza and how to prevent it.

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Patient stories

Rolling with It

Bill and Linda Mathews smiling together.

When Linda Matthews started having trouble standing up out of a chair, she wasn’t surprised. She was 70 years old, about the same age as her mother when she was diagnosed with inclusion body myositis (IBM).

“I was her caretaker, so I knew all about IBM,” Linda says. “As soon as I started showing symptoms, I went to my doctor and I said I’ve got IBM. They did the muscle biopsy and the bloodwork and the EMG. Within a week, it was definitely diagnosed.”

Often when someone is diagnosed with a disabling condition like IBM, they rely on their partner or a family member to care for them as the tasks of daily living become more difficult to manage alone. Linda, however, was already serving as caregiver for her husband Bill, who had been recently diagnosed with a different rare, autoimmune muscle disease: myasthenia gravis (MG).

In March of 2012, Bill had heart bypass surgery. About a month or so later during a routine eye exam, his ophthalmologist noticed his eyes looked a bit droopy. Linda’s brother, who had a friend with MG suggested he see a neurologist. When he did, it didn’t take long for the diagnosis to be confirmed. Bill says his neurologist thought it was the surgery that set it off.

Despite their disabling diagnoses, the Matthews do not despair. In fact, sharing similar diseases makes them more sensitive to each other’s needs. They have many of the same symptoms—muscle weakness, fatigue, mobility challenges—so they each understand, for example, when the other says they need to rest.

“Nothing is as important as getting the rest you need and taking care of yourself,” Linda says. “And it’s good that I know he’s got my back. I can say, ‘No, not right now,’ and I don’t have to justify it.”

“Sometimes you can tell when the care partner doesn’t understand that,” says Bill of other couples they’ve met. “And you can see how difficult it makes it for the person who’s got the disease. In a way, it’s to our advantage that we understand firsthand what the disease is doing to each other. We don’t have to have that fight.”

Having her mother pave the way for her has also made Linda’s journey just a bit easier. She knows what to expect, and she can plan accordingly as her muscle weakness progresses.

When she saw a Hoyer lift at an estate sale, for example, she scooped it up, knowing that one day it may come in handy if she starts having trouble moving from the bed to the chair. She has a motorized wheelchair that somebody gave her. It’s parked in the garage, though, since she still gets around fine with a rollator. The couple also recently traded their car for a wheelchair accessible van.

When they downsized their home earlier this year, Linda and Bill moved to a one-story (stairs had become a challenge) duplex next to their daughter’s family. Before they moved in, they remodeled the house to accommodate their future needs, adding a roll-in shower, raised toilets, grab bars in the bathroom, and wider doors that will accommodate a wheelchair.

The one thing that couldn’t be retrofitted for accessibility, though, was the kitchen. But Linda just winks and says, “Maybe by then I’ll teach Bill to cook, because I’m the one in the wheelchair.”

That’s not a problem for Bill. “We’ve been married for 56 years. We know how it’s done,” he says.

Linda and Bill feel very lucky to have the support of their family. They love living next to their daughter, son-in-law, and nine-year-old grandson and call on them when they need a hand. When they want to give their son-in-law a break—like when Bill needed to get to the hospital recently for cataract surgery—one of their two sons is always willing to step in and help out too.

Being part of a patient support community helps the couple in other ways. They belong to MG Texas, an MG support group in the Dallas/Fort Worth area. And they are active in Northeast Texas support group of The Myositis Association as well as on Facebook forums through Myositis Support and Understanding.

Getting together with others who share their disease helps Linda and Bill learn the medical ins and outs of both diseases, so they are better able to care for themselves and each other. It also gives them access to a whole pool of practical information that’s not readily available elsewhere: things like who is the best neurologist in a certain area, or tips and tricks people have used for managing certain challenges.

“The myositis Facebook site is wonderful, because people ask questions, and a lot of times it’s a question I have too,” Linda says. “And then in the MG group, we love it when we are able to go to the meetings. They’re always interesting, with new speakers and new ideas. It’s also nice getting to know other members who are in the same situation as we are.”

While living with conditions they know can cause significant health concerns, Linda and Bill remain upbeat.

“My mother was a wonderful example for me how to live my life with this disease,” Linda says. “You just roll with it and try to figure out another way of accomplishing your tasks.”

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Patient communities Patient stories

Meeting Patients Where They Are

Like most neurologists, Dr. Charlene Hafer-Macko treats patients with a variety of neuromuscular conditions. Her focus, though, is myasthenia gravis (MG). It’s MG patients who provide her with the intellectual challenge she loves.

“I really like this population,” she says. “There are so many things you can do to help them stay in control of their disease. And this is a group that really uses the information they have to help themselves. Helping people through the journey is the part I find the most fun.”

As an associate professor of neurology at the University of Maryland School of Medicine, Dr. Hafer-Macko serves as director of the university’s multidisciplinary Myasthenia Gravis Center. This clinic pulls together all the services an MG patient needs in one coordinated package—including an infusion suite that provides intravenous immune globulin (IVIG), plasmapheresis service, and thoracic surgeons that focus care for thymectomy for myasthenia gravis.

“Our team is very well versed in myasthenia,” Hafer-Macko says. “So not only are they providing care, but they’re also monitoring for side effects and providing education and support at the same time.”

For Dr. Hafer-Macko, it’s the education and support part of working with MG patients that she finds most satisfying. Several years into her career, she realized that she wasn’t feeling fully fulfilled by her interactions with patients. She would assess their weakness and check their blood work and tweak their medications, but these exchanges with mostly stable patients felt flat. She needed something more.

She discovered that something more in the stories her patients told about their daily experiences. They reported, for example, that even when their double vision was controlled or they were back to walking normally, they still had trouble reading or watching TV, and they felt exhausted after a trip to the grocery store or just walking across the room.

“Even when many patients are well controlled, fatigue is an element that just stays with them,” Hafer-Macko says. “Fatigue is such a tricky thing. It’s something that is not often addressed effectively. So really understanding what’s driving that fatigue was something that I got very interested in.”

She teamed up with occupational, physical, and respiratory therapists to develop a better understanding of fatigue and the needs of MG patients. Together with this team, Hafer-Macko developed a toolbox of techniques for helping patients avoid or overcome fatigue and other challenges.

Listening to her patients’ stories has also helped Hafer-Macko become a better doctor.

“I learned how to ask questions differently, questions that gave me better data,” she says. “And then once I’d ask them differently, I could coach individuals on how to give me better information.”

When she would ask a question like, “Are you better,” for example, she found the patient’s response—“Yes, I’m better now”—didn’t provide much in terms of measurable outcomes. If, however, she asks about how long the patient can read before their eye symptoms make them put the book down, she has a benchmark that she can compare to a previous exam. It’s data that shows a meaningful response to treatment.

Stories of her patients’ fatigue also inspired Hafer-Macko’s research. She is part of a group at the Baltimore Veterans Association Medical Center that is exploring exercise, nutrition, and fitness in older adults. One of the things they have learned is that, because of their weakness, those with MG must work extra hard to accomplish even minor tasks like walking to the bathroom. This leaves far less energy for all other activities.

“It’s like every time they walk to the bathroom, they’re running a marathon,” Hafer-Macko says. “They have very little reserve. They’re just working very hard because of that weakness.”

Dr. Hafer-Macko has been recognized by the Myasthenia Gravis Foundation of America (MGFA) for her outstanding work with the MG community. She has served on the board of directors for the organization and currently serves on two of their committees.

Ironically, Hafer-Macko’s greatest inspiration is not a patient at all. It’s her mother. At 82, Charlotte Hafer still teaches dance—these days remotely by zoom. In 41 years of teaching elementary school during the day and dance at night, she never took a sick day. She continues to work as a math and reading specialist by day and teaches dance at night. As a devoted theater fan, her mother saved up her sick leave compensation so she could go to shows in New York City and in the Pennsylvania/Maryland/DC area to see shows. This year, Charlotte engaged the brave new world of Facebook to win a contest in which she was named Broadway’s Biggest Fan.

“She’s actually my inspiration,” Hafer-Macko says. “To deal with my mom and her medical hang ups, I’ve learned so much about taking care of people. You’ve got to meet folks where they’re coming from. They’ve got nuances, and that makes such a difference in working with a patient to find a care plan that will work well for them.” 

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Advocacy Health Information

Tips and Tricks for Managing MG

We recently spoke with neurologist Charlene Hafer-Macko, MD from the University of Maryland’s Myasthenia Gravis Center about ways myasthenia gravis (MG) patients can keep themselves healthy and stay out of crisis. Here are some of her tips and tricks:

Communicating about your condition with healthcare providers, especially in an emergency situation, can be a challenge.

  • Wear a medical ID bracelet, such as the MedicAlert, that identifies you as having myasthenia gravis.
  • Know what medications MG patients need to avoid, and carry a list of them in your wallet for easy reference.
  • Download the MyMG app from the Myasthenia Gravis Foundation of America. The app also has a list of medications to be avoided with MG.
  • Document your symptoms, treatments, and how they affect your daily life so you can have these data readily available when your doctor asks, “How have you been feeling?”
  • Always ask your healthcare provider or pharmacist if a newly prescribed medication is on the list of drugs MG patients need to avoid.
  • Use online resources to look up conditions and medications. Just be sure the source is reliable and informed by science.

Weak muscles can make breathing difficult, but there are things you can do to make breathing more efficient.

  • Use pursed-lip breathing, a technique in which you breathe out through puckered lips. See this demonstration.
  • Learn how to breathe into your belly by lowering your diaphragm. Learn how here.
  • Explore mindfulness practices that focus on breathing. This is also helpful for stress reduction. Find a guided exercise here.

MG symptoms tend to get worse with heat for many people. To avoid melting when it’s warm:

  • Take tepid showers. If you really like a hot shower, finish it off with a cold splash.
  • Avoid being out in the sun for long periods of time.
  • When the weather is hot, plan big activities for the cooler part of the day, and take advantage of air conditioning as much as possible. Ask your electric power company for a form that will ensure you are a higher priority for power when the electric goes out a storm.
  • Consider using a cooling vest if, for example, you want to sit in the hot sun for hours at the baseball game. Here is a sample of some available models.
  • Sporting goods stores also sell cooling towels and reusable, freezable gel packs.

Not getting enough sleep will make anybody more fatigued. For those with MG, insomnia can be related to corticosteroid use, anxiety, stress, and other effects of chronic illness. Good sleep habits can help. Here are some tips:

  • If you take prednisone, do so early in the day.
  • Schedule your bedtime so you get at least 7-8 hours of sleep.
  • Make a habit of going to bed at the same time every night and getting up at the same time each morning, even on the weekends.
  • Keep your bedroom quiet, dark, relaxing, and at a cool temperature.
  • Create a relaxing bedtime routine.
  • Ban electronic devices, such as TVs, computers, and smart phones, from the bedroom, and avoid using screens during the hour before you go to sleep.
  • Avoid large meals, caffeine, and alcohol before bedtime.
  • Exercise regularly to help you fall asleep at night.

And finally, Hafer-Macko advises that those living with MG watch their bodies, learn how their treatments affect them, and plan activities accordingly. For example, if you (or those you live with) notice that you start to slow down as you get closer to your next pyridostigmine (Mestinon) dose or IVIG infusion, that may not be the best time to schedule a big day with the kids that will use up a lot of your energy.

Similarly, if you take pyridostigmine, notice how it affects you. If it starts to wear off too soon, mention it to your doctor; you might need to adjust the dose. Also, be aware of scheduling high-energy activities like shopping or cleaning during times when your meds are wearing off.

The following organizations offer additional resources, including support groups, education, and research:

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Advocacy Patient communities Patient stories

Being There for Those in Need

Rebekah Dorr never set out to become a myasthenia gravis patient advocate. It started with her Facebook page, Myasthenia Gravis Unmasked, and just sort of evolved. That’s where, in 2014, Rebekah first shared the story of her own harrowing journey with myasthenia gravis (MG) and some of what she learned along the way. She wanted to bring hope to those who live with the disease by raising awareness about how it affects individuals and correct some of the misconceptions even the medical community still endorses.

When someone messaged her on the page asking for help, she wasn’t sure what she could do. “But I’d advocated for myself,” she says. “So I thought, let me see if I can help this person. I think she was indebted to me, because she turned around and started sharing about me in other groups.”

Since that time, Rebekah has lived on her phone. She posts educational content about living with MG and provides a platform for the personal stories that give voice to the challenges myasthenics face every day. She also responds to every comment and private message—sometimes dozens a day—from those with questions or who need her help to get the care they need.

“I was frustrated with what was available at the time,” Rebekah says of the MG support system. “There was research, there were support groups, and that was it. There was this huge no man’s land for what was happening for the patients. And I was like, who’s taking care of patients the way I needed to be taken care of? So that ended up becoming my passion.”

At least part of this passion for walking with patients in their time of need comes from her own experience. She knows what it’s like to be alone and afraid, not understanding what was happening to her, and not trusting the medical community to make the right decisions for her care.

Rebekah’s symptoms began one summer when, out of the blue, she started feeling really tired, like she had the flu. Very quickly, however, those symptoms escalated to significant shortness of breath. She had trouble chewing and swallowing, and her legs became so weak she couldn’t walk. It seemed like one minute she was playing on the beach with her cousins and the next she was unable to get out of bed.

The next two years was a terrifying odyssey that included countless ER visits, hospitalizations—including several stays in ICU and more than one time when she had to be resuscitated—lab tests, scans, surgeries, spinal taps, and specialist consultations. It was a time when, looking back, she wished she’d had someone she could have called upon to help her know what to do.

Doctors refused to believe that a woman of 22 could develop MG, despite the fact that her grandmother also has MG and other evidence to support the diagnosis. Instead, they said she was faking the fact that she couldn’t walk and couldn’t breathe, and diagnosed her with somatic conversion disorder (meaning she was mentally ill, making it up). This label, together with the disrespect with which she was treated, did more damage to her health and spirit than MG ever could. It made her question her own truth and made her terrified to seek the care she desperately needed.

“I didn’t know anything,” Rebekah says. “I didn’t know blood tests for antibodies had to be sent to a special reference lab. I didn’t know my shortness of breath wouldn’t necessarily make my oxygen saturation go down. They didn’t explain the drugs to me. I had no idea I was being overdosed. I had no idea what any of it was.”

But she learned. Having people who depended on her for answers forced Rebekah to dig into the research and understand all she could about MG. She quizzed her own neurologist, listened closely to conversations she heard in hospital hallways, and read everything she could get her hands on. She also listened to the stories of patients. And she became the expert others needed.

“Word of mouth was spreading about me,” she says. “I don’t think the word advocacy was ever used, but it was just, hey, contact this woman, she’ll help you. And so I started getting flooded with messages. It became a job for me. It became my life.”

Rebekah now has clients all over the world, some of whom she works with for months or years at a time, sharing knowledge and awareness. More often, however, she’s there with patients—in-person for local clients, but by phone for most—when they need to go to the ER or are admitted to the hospital to help them navigate a system that often doesn’t understand this rare disease.

By 2016, however, Rebekah realized she was not receiving the kind of respect she needed from the healthcare community. She didn’t have credentials or the backing of some authority that would make medical professionals take her seriously. So she started her own nonprofit organization: The Myasthenia Gravis Hope Foundation.

“Our whole focus is advocacy,” she says of the Foundation. “I define that as clinical advocacy. We’re not just doing awareness or education. We’re actually coming in for the patient when they are most vulnerable to challenge the stigmas and misconceptions about MG that severely affect how they are perceived and treated.”

Beyond Rebekah’s lifesaving advocacy, MG Hope also provides funds for patients to travel for care and to cover the cost of critical medication until they can get enrolled with manufacturers’ assistance programs. The organization also helps patients access medical and specialty care and emergency medications.

For Rebekah this work—none of which she is paid for—is all about helping others avoid the hell she went through. She remembers sitting in a tiny closet of a hospital room which she had occupied for thirty-five days. She’d gone in for a thymectomy, but never got it. Instead, she experienced anaphylactic shock as a reaction to blood products, endured two resuscitation codes, went through cholinergic crisis because of titration mistakes, and so much more.

She remembers thinking if only somebody had educated her about these possibilities, she could have prevented nearly all of them. As a person of faith, that’s when she vowed to be the one to help others overcome or avoid these challenges. Now as the founder and CEO—and the only active member of the staff—of the MG Hope Foundation, she’s doing that work.

“I’m passionate about focusing on the patient experience,” Rebekah says. “I think that honesty and vulnerability is where we have the power to transform things, to actually step into somebody’s life and to maybe change it for the better. Whether they need emotional support or education, I want to show up for them in whatever way I can. That’s just where my heart is.”

Rebekah’s grandmother, Doris (95) was diagnosed with MG more than 60 years ago. This photo of Doris and Rebekah was part of MG Hope Foundation’s project called The Humanity Behind MG, designed to capture the essence of the human experience of those who live with the disease.