Tag: myositis

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Patient stories

When You Need a Little Help from Your Friends

Maddie Cure, a young female advocate.

Madison Davis had been planning her career in the military since she was seven or eight years old. Living near the Naval Academy in Annapolis, Maryland, she joined the Naval Sea Cadets and was intent on moving up through the ranks. She strategized her high school resume to help her get accepted into the Coast Guard Academy, as a soccer player, if possible.

“She was obsessed with the Naval Academy,” says her mom, Christine Davis. “She always wanted to visit there and wear the uniform and work on advancing her ranks. She was a big creator, too, a lego girl, up until she was 13 or so. She always talked about wanting to work on Lear Jets, fixing planes. She always knew what she wanted to do, and she was excited.”

In May 2017, however, gazing down at her daughter lying limply in a hospital bed as doctors gave their diagnosis, a strange, rare disease that seven weeks earlier had weakened Maddie’s muscles, given her a rash over large portions of her body, and paralyzed her into the worst pain she’d ever experienced, Chris cried. Not only was her daughter suffering, but she knew all Maddie’s dreams had just been evaporated by an autoimmune disease they couldn’t even pronounce: juvenile dermatomyositis (JDM).

“I was so numb to everything in the hospital. It really didn’t hit me,” Maddie says. “I wasn’t actually facing all these things I had just lost. I was just on to the next thing. Like, okay, so what do I do now? What schools do I apply to now? I didn’t really give myself a lot of time to deal with it in the moment. And believe it or not, I felt like I was handling everything very well.”

The next few years were difficult for Maddie. She is fortunate that she lives near one of the world’s leading Myositis Centers at Johns Hopkins University, so the medical treatment she received, including prednisone, methotrexate, and intravenous venous immune globulin (IVIG) therapy, was excellent and effective. Her mental health, however, was a different story.

Maddie missed out on much of the excitement of her senior year of high school because she was too weak to participate in many of the activities. Not only was her athletic strength gone, but the prednisone, a steroid medication, made her gain weight and gave her what she calls “’roid rage,” making her emotionally erratic. She lost friendships, because she missed a lot of school and couldn’t go out on weekends, and her friends just didn’t understand why she was behaving so strangely.

“She suffered a lot in many different ways,” Chris says. “We were just trying to survive it every day and trying to seek answers to make it better.”

Maddie and Chris did find answers, mostly from others who live with rare diseases and know what Maddie was going through. On her first outing after spending three weeks in the hospital followed by two weeks in rehab to relearn how to walk, Maddie and Chris attended a local support group meeting of The Myositis Association (TMA). The speakers at that meeting happened to be three members of the CSI Pharmacy team, talking about immune globulin (IG) therapy and home infusion.

During the presentation, a representative from CSI Pharmacy shared her own journey with myasthenia gravis—another rare autoimmune disease—and IG therapy. In her talk, she described how her disease had ended her career as a Navy nurse, and how hard that was to deal with.

Maddie remembers glancing at her mother and whispering, incredulous, “Did she just say she was in the Navy?”

After the talk, Maddie and Chris approached the speaker and shared Maddie’s similar regrets about losing her own dream career in the military. After that, The two not only became good friends, but she also became Maddie’s home infusion nurse, allowing Maddie to receive her IVIG treatments at home rather than in the hospital infusion center. Later, when Maddie went off to York College of Pennsylvania, her new friend helped her learn how to give her own IG treatments subcutaneously (SCIG, under the skin, rather than in the vein).

The Davises also found out about Cure JM Foundation, a group more focused on children with myositis. They attended the Cure JM annual patient conference, and there Maddie befriended a group of other teens who also lived with myositis. It didn’t take long for Maddie to become a leader in this organization, one of the “older kids” who, the following year, helped lead the panels she had learned so much from the previous year.

Maddie discovered a passion for helping others through the rough spots of living with JDM. She had a Facebook page and website, Maddie Strong, where she talked about her challenges with her disease. Once she even posted a video demonstrating how she gives herself SCIG treatments.

Maddie may have powered through at the beginning of her disease, but eventually the walls started crumbling. During the summer before college, she started looking around and realizing how much had been taken away from her.

“That’s when I started dealing with depression,” she says. “I was thrown so much off course. It was really, really hard. I know everything happens for a reason and I’m really I glad to be where I am. I’m glad I’m at York. I’m actually really happy I’m not playing soccer. But it took a lot out of me.”

It’s the friends she met along the way, the other kids who share this disease and understand the journey, who have helped her get through that dark time.

“They have always been the first families that we’ve reached out to,” Chris says. “If she was feeling really low or like life isn’t worth living anymore or the medicine is just too much, she always had people to turn to who could walk her through it, because they’ve already been there.”

Now as she prepares to start her junior year of college, Maddie is strong. She’s an education major, making the dean’s list, works with K through eighth graders at the York City schools, and is an education technology entrepreneur with a fun teaching app for kids she’s hoping to market. Best of all, her disease is in remission.

Still, kids who are struggling with coming to terms with the life-altering experience of a disabling rare disease diagnosis like JDM are never far from this young advocate’s mind.

“The one thing that I wish I could tell parents is, for kids who are going through this, the mental health aspects are a really big deal,” Maddie says. “I would say focus your attention more on the fact that your kid is going through a lot of mental stuff right now. They are confused and they don’t understand and its really scary. Just talk about what’s going on.”

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Health Information Patient communities

Get Connected

When a person has a rare disease, they often feel isolated, confused, afraid, and hopeless. Living with a chronic medical condition that no one around you has ever heard of let alone understands is a challenge on many levels. With rare diseases especially, even health care professionals often don’t understand the disease well, which can add to your confusion and fear. Combine that with the challenges and isolation of COVID-19 confinement, and you may find you’re wading knee deep in serious hot water with mental health issues.

Those who care for someone who is diagnosed with a chronic, debilitating, and mysterious disease can also be devastated. Often you must sacrifice your own goals and dreams in order to attend to the needs of your loved one. Depression is common in caregivers who often suffer in silence, unwilling to reveal their own negative feelings.

Connecting with a support group can be a tremendous help, however. Such groups can be an important source of both emotional encouragement and practical advice. Benefits can include:

  1. Meeting and making friends with other people who live with the same rare disease and similar experiences
  2. Learning about the disease and how it is treated
  3. Being able to talk honestly about your disease and your feelings about it with others who “get it”
  4. Learning how others cope with the challenges of the disease
  5. Developing hope and a sense of empowerment that you can make it through the challenges

Formal patient support organizations often expand their reach to include advocating to improve healthcare for other rare disease patients, supporting scientific research, and providing financial assistance to members.

CSI Pharmacy wants our patients to thrive, despite their health challenges. That’s why we connect with a number of groups that support the patient communities we serve. These are all nonprofit organizations, and CSI Pharmacy supports them financially so they can support our patients and caregivers. We encourage our patients to reach out to one or more of the following groups, especially at this time of uncertainty during the COVID lockdown:

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Advocacy Patient stories

Giving Back One Unit at a Time

Marianne Moyer got a standing ovation recently when she announced to a roomful of rare disease patients at a medical conference that her husband donates plasma every two weeks. Her husband, John, started donating blood and plasma more than 20 years ago, even before Marianne started relying on intravenous immune globulin (IVIG) therapy—a plasma-derived product—to treat myositis. Since then he estimates he has given about 18 gallons of blood and 63 gallons of plasma.

For those like Marianne who depend on immune globulin to help control inflammation in autoimmune and immune deficiency diseases, having enough plasma available to companies that make plasma products is a constant concern. Human plasma is not a drug that can be artificially synthesized. It requires people to donate on a regular basis so therapies such as immunoglobulins, coagulation factors, alpha-1 proteinase inhibitor, and albumin can be produced.

This is an important concern right now because fewer people are donating plasma because of coronavirus restrictions. Many citizens are staying home, which means many are not donating. Donation centers are also taking steps to create social distance within the facility, so they are asking donors to schedule appointments rather than drop in, and they are seating donors farther away from each other. Fewer donations now could mean a shortage of plasma-derived therapies in six to nine months.

Most people are aware of how important donating blood can be, especially when disaster strikes. People also assume that when they give their blood, whatever other blood products are needed can be derived from that donation. The truth is a bit more complicated, though.

Plasma is the golden yellow liquid part of human blood in which red blood cells and proteins are carried throughout the body. Donors can offer their whole blood—red cells and all—on a one-time basis or, like John has done, they can donate every 56 days.

Plasma donors, however, can give more often, because those all-important oxygen-carrying red blood cells are returned to their bloodstream during the donation process. And because plasma is manufactured into lifesaving therapies for many diseases, plasma donors are encouraged to give regularly—as often as twice a week, at a certified plasma donation center.

For the Moyers, volunteering in the community is a way of life. They have been running one of the most successful myositis support groups in southwest Florida for 13 years. Marianne has served on the board of the local Red Cross, and John has been treasurer of their homeowners association and property manager at their church. And they both volunteer with programs at the local public schools. For John, donating plasma is just another way to give back.

“September 11 happened shortly after we moved here to Florida,” John says. “I would donate blood when we lived in Washington, D.C. So when they were calling for blood [after the 9/11 attacks], we both rushed down to the hospital to donate.”

Marianne was heartbroken to find out that, because of her myositis, she was ineligible to donate. But John has been giving about every two weeks ever since. When Marianne was prescribed IVIG in 2003, his donations became even more personal.

Marianne has a form of myositis called necrotizing myopathy, an autoimmune disease of the muscles that makes it difficult for her to do things like climb stairs and lift even small objects. Myositis has also brought interstitial lung disease, which causes scarring in the lungs making it difficult for Marianne to breathe at times. Her IVIG infusions—which she receives in the comfort of her home—control these symptoms well, allowing her to live a fairly normal life.

“All the years when we were working, we didn’t have much time to participate in community affairs or charities,” John says. “Life has been good to us, and now that we are retired, I can afford to spend a couple hours at the donor center. It just makes me feel good to know that I’m helping, not just one person, but many people.”

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Health Information

Telemedicine How-to

As coronavirus control measures keep us at home, many in our patient communities may be worried about how they can access needed health care. In addition to symptoms that might be COVID-19, people still need ongoing care for their myositis, myasthenia gravis, CIDP, and other chronic conditions even during the pandemic. And of course there will still be concerns about injuries, tick bites, allergies, and other everyday needs.

Fortunately, telemedicine is emerging as a way for patients to get the care they need without having to visit the doctor’s office, urgent care clinic, or emergency room. During the COVID-19 crisis, regulations and payment policies are being relaxed to allow access to care remotely, so you don’t have to risk exposure to coronavirus infection. Remote visits allow you to discuss your healthcare issues in real time with your healthcare provider by phone, email, video chat, or through your provider’s patient portal.

If you contact your provider and he or she recommends a virtual visit, here are some ways you can prepare ahead of time so you can make the most of this opportunity:

  • Take care of the routine requests. If you need medication refills or paperwork for your employer or insurance plan, you can ask the office staff for this over the phone or manage it through the patient portal. You may not even need a visit with the provider for this.
  • Check with your insurance plan. Many insurance plans are providing coverage for telemedicine services. It’s best to give them a call ahead of time, however, just to be sure your visit will be covered.
  • List your medical concerns. Write down the two or three issues you want to be sure to discuss during the virtual visit, so you don’t forget the important things. (It’s a good idea to do this with in-person visits too.)
  • List your medications. Write down all the medications—including over-the-counter meds and supplements—that you are currently taking. Include the dose and how often you take them. And be sure to mention anything you take “as needed,” such as pain medications and antacids.
  • List your symptoms. Write out what symptoms are giving you trouble, when they started, how they have changed, what seems to trigger them, and what seems to make them better.
  • Send photos. Skin issues, such as rashes, bruises, moles, lumps, and insect bites can be “examined” by the provider in a picture. Be sure the image is in focus and you have good lighting when you take the picture. If a rash is spreading, you can take a series of photos over several hours or days, drawing a circle around the area with a pen. Be sure to note the date and time. Ask the staff when you make the appointment how they prefer you to send these images: email, text, or through the patient portal.
  • Organize your data. If you have been monitoring symptoms, such as blood pressure, blood sugar, weight (to identify water retention), or temperature, have these numbers organized and available. It’s also a good idea to have this equipment available during the visit so you can take these measurements then too.
  • Be ready to talk. Be prepared to answer the phone at the time of the appointment so you aren’t playing phone tag. Find a quiet place with good cell phone reception so you and the provider can both hear well.
  • Know your equipment. If you are using video applications, be sure you know how the technology works ahead of time. You may even want to test out the camera and microphone on your device ahead of time.

Not all issues lend themselves to telemedicine visits. Emergency situations, such as a heart attack or stroke, cuts or lacerations, or broken bones that require x-rays, splints, or casts need to be handled at the emergency room. Telemedicine also won’t work for procedures, such as PAP smears, mammograms, EMG studies, and cardiograms (unless you have special equipment that can collect and transmit an EKG).

Generally, virtual visits work best for simple issues and follow-up consultations that don’t require hands-on examination or in-person observation. Your provider’s office staff can help you decide if a telemedicine visit will work or if your concern might be better handled in person.

If you do need to go to the office or emergency room, you can be sure that everything possible is being done to prevent the spread of coronavirus. Most providers screen patients on the phone to be sure they don’t have symptoms of infection. If they do, those patients are usually seen outside in their car, so they don’t bring the virus into the office.

Equipment and clinic surfaces are disinfected thoroughly and frequently. Healthcare providers usually wear as much personal protective gear as they have available, including gloves, gowns, masks, eye protection, and shoe coverings. You should also wear a mask whenever you go anywhere other people may be nearby, including to a medical facility.

Categories
Patient communities

Honoring Our Rare

As the shortest month of the year, February is always the rarest month. Because of this, the last day of February has been chosen as Rare Disease Day. This year, however, is rarer still, because it’s leap year, the time when an extra day is added to the calendar: February 29. Which makes it an even better time to honor our rare disease patients!

Rare Disease Day is a time when advocates take to the soapbox to raise awareness for the more than 6,000 rare diseases that have been identified worldwide. More than 300 million people are affected by these diseases at some point in their lives, which adds up to about the population of the United States!

CSI Pharmacy works with a number of rare disease organizations to bring awareness and education. Among these is Myositis Support and Understanding. Founder Jerry Williams was diagnosed with polymyositis in 2003. He is a tireless (despite the fatigue of his illness) advocate for those living with myositis diseases.

Like many who live with a rare disease, Jerry’s myositis journey has been long and challenging. It started with muscle pain, severe weakness, muscle wasting, and fatigue. Initially, when they couldn’t figure out what was going on, doctors told him these symptoms were all in his head. Even after being identified as myositis, his disease has resisted treatment and been riddled with complications. He’s spent long stretches of time in the hospital over the last 17 years with flares, infections, and other complications. Myositis has even forced him to end his career in the banking industry and go on long-term disability.

“Leaving the workforce was a blow,” Jerry says. “I thought, what am I going to do? I knew I needed a purpose.”

Jerry set to work learning about this autoimmune disease of the muscles. In addition to reading everything he could, he looked around for others who had myositis. He knew their first-hand experiences would be at least as helpful as the information from medical sources.

Through this process, Jerry recognized there was a need for more patient-focused services and programs for those who live with myositis diseases. In 2010, he started a Facebook support group called “Polymyowhat: Understanding Myositis.” As the group attracted members with the several other forms of myositis in addition to polymyositis, he changed the name and eventually formed the nonprofit Myositis Support and Understanding (MSU). The all-volunteer organization is run completely by those who are directly affected by myositis, including patients and care partners. Jerry serves as President and Executive Director.

On this the rarest day of the year, Jerry’s message to others who live with rare diseases is never give up.

“Don’t accept the status quo,” he says. “When you’re diagnosed with a disease like myositis that limits your life, you have to find new ways to live your passion.”

Jerry has found his passion in helping to empower others who live with myositis to advocate for their best life. MSU now has two websites, several Facebook support groups, and live online video support sessions. MSU operates the official Myositis Support Community on the Inspire health support platform. They also provide educational programs, a smartphone app for tracking symptoms and treatments, clinical trials opportunities, and a financial assistance program.

“Living with chronic illness has also offered me some wonderful opportunities,” Jerry says. “It’s amazing the relationships I have built. And I never would have imagined working with a nonprofit as part of what I do and who I am. Now I can’t imagine not doing it.”

CSI Pharmacy is pleased to support the efforts of MSU and other patient organizations that are helping rare disease patients stay engaged with the world. We provide therapies uniquely suited to rare diseases, offering these therapies to more than a dozen patient communities. This month we are thrilled to honor those who daily cope with the challenges of the following rare diseases:

  • Chronic inflammatory demyelinating polyneuropathy (CIDP)
  • Guillain–Barré syndrome (GBS)
  • Huntington’s disease
  • Immune thrombocytopenia (ITP)
  • Multifocal motor neuropathy (MMN)
  • Multiple sclerosis (MS)
  • Myasthenia gravis (MG)
  • Myositis
  • Pemphigus and pemphigoid
  • Primary immune deficiency diseases (PIDD)
  • Stiff-person syndrome (SPS)