At this meeting, group members heard from a panel of individuals representing the myositis health team from both personal and professional perspectives.
Ms. Roberta Horton, LCSW, ACSW – Facilitator of the Panel Discussion
Ms. Horton has spent her professional social work career developing, supervising, and expanding innovative support group programs for people with rheumatologic illnesses, including lupus, rheumatoid arthritis, and myositis, as part of Hospital for Special Surgery’s model of integrative and holistic care. She’s the Assistant Director for the Dept. of Patient Care & Quality Management.
Ms. Horton shared that the panel represents the heart of the myositis support network, which in turn represents a story of challenge, but also of hope. The panel nurtures hope and optimism in the midst of uncertainty. She introduced each of the panelists and asked them to share how they have experienced myositis from the point of view of nurse, patient, social worker, and physician.
The panel discussion began with Linda Leff, RN.
Linda Leff, RN – A Nursing Perspective
Linda Leff is the Coordinator of the Infusion Unit at HSS. She started the Unit in July of 1994, and this year she celebrates her 15th year at HSS. Ms. Leff’s leadership, knowledge, and compassion for people with rheumatologic illnesses like myositis make the Infusion Unit truly special.
Ms. Leff shared the history of the infusion therapy unit starting eleven years ago, when the Division of Rheumatology determined a need for an infusion unit dedicated to the care of patients with rheumatic diseases. In the Unit, Ms. Leff sees people with all types of myositis, and she recognized many faces at this particular meeting. She meets people at every stage of their illness. At the very beginning stages, patients are often frightened and at the worse stage of health as they are trying to find a treatment regimen that works. Her role as a nurse allows her to see patients through to where they are feeling better, like where our patient panelist is today. She finds it rewarding to see patients feeling better and to be a part of a patient’s progress. Regardless of the type and treatment of myositis for an individual, she listens to patients talk about both the good days and the really bad days. She mentioned that each doctor has a number of things in his or her bag of tricks in making decisions about treating patients since myositis is truly a unique disease. She talked about how doctors tweak the treatments by maybe taking away a medication, trying a different medication, or changing the dosage in order to help the patient feel better. Ms. Leff gave the example that she could see 5 people with the same type of myositis in the Unit at the same time, and each will have completely different experiences.
In her work with patients, Ms. Leff has noticed that the one year mark of treatment is a real milestone. It’s very common for her to hear a patient come to the realization that he or she has been experiencing the symptoms of myositis for a year and that they are still trying to manage this disease. Once a patient accepts the diagnosis and follows the treatment plan the doctor prescribes, it can be frustrating that remission hasn’t occurred. The idea of that myositis is a “chronic” condition seems to set in at this time. Ms. Leff said she hears patients ask, “Why am I not in remission? Why am I not better?” Ms. Leff is very supportive of patients, telling them to, “Hang in there,” and she supports them in the up and down feelings of doing a little better one day and a little worse another day. She also finds that many treatments are successful from the start, while others begin as failures and may turn into a successful treatment later.
At HSS, Ms. Leff enjoys the team approach to treating patients. She discussed how the team at HSS doesn’t merely treat a disease. Nurses, doctors, social workers, nutritionists, and physical therapists all work together on behalf of the patient. She stressed that the patient is the center of the health team and the most important aspect of the team.
Ms. Leff transitioned the discussion over to our next panelist by encouraging the group to take something away from the patient participant’s story of hope and for everybody to really join each other in their own personal stories of myositis.
Patient Participant – A Patient Perspective
The patient panelist was diagnosed with myositis in May of 2000, and has been off all medications for at least 5 months. The patient participant lives with her husband and teenage son in the New York area and was willing to generously share her own story of remission with us on this evening.
In response to Ms. Leff’s comment, the patient participant acknowledged that her story is not even just her story, but Ms. Leff’s story and Dr. Kagen’s story, too. She said that without them, she couldn’t be where she is today in her health. The patient participant’s story of myositis begins 5 years ago when she was diagnosed with dermatomyositis. She experienced many of the same difficulties that other group members have shared during meetings. She couldn’t walk up stairs or a hill near her home. Her CPK was extremely high and she was suddenly very weak.
The patient participant is very familiar with taking a number of medications used to treat myositis. She said that at first, nothing seemed to be helping her feel better. She agreed with Ms. Leff’s assertion that the one year mark is an important time. Our patient participant thought that when her treatment hit a year, she would get better. She said she was very dedicated to getting better and tried everything, including no sugar, no salt, and no alcohol. The patient participant shared the story about lifestyle changes she made, such as avoiding alcohol at social events and holiday celebrations. She said her health was the most important thing and she was very diligent about following her doctor’s guidance. Eventually, she felt herself getting better.
She has not taken prednisone since last June and she was pleased to say that she stopped IVIG last December. She continues to take an antibiotic twice a day and with Dr. Kagen’s guidance, eventually plans to lower the dosage. The patient participant courageously agreed to participate on this panel because when she remembers the time when she was actively experiencing the symptoms of myositis and just wanted to know someone who got better. She really wants others to realize that there is such a thing as remission from myositis. Though unfortunately it may not happen for everyone, it is possible.
Angela Hunter, LMSW – A Social Work Perspective
Ms. Hunter is the Coordinator of the Myositis Support Group at HSS. She has been working with the group for the past three years, both facilitating discussions among members and arranging for expert guest speakers. She has also written a number of articles on the issues affecting individuals with myositis, some of which are published on the HSS website. She is also a full time social worker in an international adoption agency.
As a social worker, Ms. Hunter’s role in working with myositis patients is to facilitate the Myositis Support Group here at HSS. The Myositis Community at HSS is quite strong with over 60 members on the mailing list and approximately 12-15 people attending the group meetings each month. She shared that the goal of the support group is to bring people living with myositis together in a supportive environment to enhance coping skills and to learn more about their disease. Group members learn from expert speakers on a range of medical issues. However, much of the learning about myositis actually comes from talking with each other. The group members are the experts in coping with the daily challenges that myositis often brings. Ms. Hunter mentioned that in this group, members share their experiences and feelings, build connections with one another, and often form friendships that continue outside of the group.
This group is very special for many of us. Ms. Hunter has heard from many group members that the Myositis Support Group at HSS was the “first time they had ever met another person with myositis.” Next, Ms. Hunter read a quote that demonstrates the feelings of many of our group members. “The Myositis Support Group is the only place where I can talk about the difficulties of living with myositis and know that everyone understands,” Ms. Hunter remarked. “I go away from the meetings strengthened by hearing how the other members deal with their myositis challenges on an ongoing basis. I really feel the absence of each person when either I, or they, have missed meetings.”
The Myositis Support Group addresses a variety of topics, which are chosen based on feedback from group members on annual surveys. Over the past three years that Ms. Hunter has coordinated the group, a number of topics have been covered, including stress, exercise, nutrition, physical therapy, relationships, finding inspiration, medications, and Tai Chi. Some of these topics have been addressed by a guest speaker while others have been facilitated by Ms. Hunter as an open forum discussion. During these meetings, group members have shared the range of emotions and types of challenges that people living with myositis often face. Many of these summaries can be found on the HSS website.
Next, Ms. Hunter shared some of the feelings that group members have expressed during the meetings. Members have shared their initial feelings of shock when they are diagnosed with myositis, since most people have never heard of it before and friends and family kept telling them they were fine. It can be frightening when the cause and cure of a disease that someone is diagnosed with is unknown. Also, many members share that they were misdiagnosed initially and went through a period of wondering whether or not the doctor was even correct about their myositis diagnosis. Ms. Hunter talked about how the group discusses feelings of fear and sadness about the impact of myositis and the many changes to a person’s life, such as with relationships, jobs, and hobbies. Some group members have expressed feelings of isolation with a rare disease that friends and family have difficulty understanding. In addition, the limited mobility can prevent individuals with myositis from joining others in activities, trips, or outings. In the meetings, group members often talk about their frustrations and challenges first, and then they brainstorm on ways to cope with the effects of myositis. Ms. Hunter mentioned that group members often have wonderful suggestions for each other for how to deal with daily challenges, whether it’s directing group members to resources in the community or giving a tip on how to deal with fatigue. Ms. Hunter mentioned that she really enjoys seeing the connections that group members have formed with one another and the group, and to be a part of such a welcoming and supportive community.
Lawrence Kagen, MD – A Physician’s Perspective
Dr. Kagen is an Attending Physician at HSS and NY Presbyterian Hospital since 1979. He is also a Professor of Medicine at Cornell Medical College since 1979. He has published more than 100 articles on the subject of polymyositis, dermatomyositis, and inclusion body myositis. He has also published a book called, “Myoglobin; Biochemical, and Physiological and Clinical Aspects.”
Dr. Kagen pointed out that on this evening, you could see right away that although myositis is a rare disease, we were able to fill a room with people with myositis and build a small community. He acknowledged a range of feelings that patients have when they are first diagnosed with polymyositis, dermatomyositis, or IBM, since they often have never heard of it before. He spoke about the feelings of isolation, the fear of medications, anxiety about the future, and the loss of independence. Oftentimes, patients even have the feeling that their doctor doesn’t know anything about it either. He wanted the group members to know that they aren’t alone. They can find support in each other and see that others are interested in them beyond one’s physiological situation but also in one’s social situation. Dr. Kagen mentioned that the Myositis Support Group is in its 9th year, beginning with several patients indicating that they had never met anyone else with myositis. At that time, we had a group for Lupus and with the number of patients with myositis at HSS growing, the need arose for a group dedicated to those with myositis. As a result, Dr. Kagen approached Ms. Horton. The group began with six members and has been growing ever since. In the beginning, a social work student facilitated the Myositis Group, but for the past two years, the group has had a professional coordinator.
Dr. Kagen spoke about the heavy burden of bearing an illness that persists for many years. He recognized that having an illness for 5-10 years is a big slice of life, but that individuals with myositis can form a strong group and lobby for the things important to them. Dr. Kagen encouraged group members to gather together to focus more attention on myositis. As one person with myositis, it can be hard to feel heard; but as a group, people are more willing to listen.
Dr. Kagen said that the medical community is trying their best to learn about myositis but that they have really fallen short of where they should be in terms of finding out what causes myositis and how to cure patients with it. We don’t really know why patients have myositis, why it persists, or why it targets the muscle. However, we do have a lot of information about treating it, and over the years, progress has been made in learning more about it. Since myositis results in a chronic inflammation, most treatments are directed at the inflammatory response. We do know about the mechanism for how tissue damage occurs, so treatments are used to avoid damage from occurring.
Another difficulty with myositis is diagnosing it. Dr. Kagen recognized that “weakness” is a difficult idea to transmit to others. He said that when the doctor asks a patient what’s wrong, they often reply that they don’t feel quite right. The patient could be weak, fatigued, tired, or depressed. When we don’t have the words to express the symptoms, it is hard to know exactly what is wrong, and that is a major reason why myositis often goes unrecognized for a while. Other health conditions are diagnosed at the time you see the doctor, such as pneumonia. Unfortunately, that’s not usually the case with myositis. Dr. Kagen assures the group members that they are not alone and that we have a lot to tell each other -- there are many known ways to help patients.
The Infusion Unit can be very helpful for some patients to provide medication that can relieve symptoms and, in some cases, make a real difference in people’s lives. Dr. Kagen mentioned that the patient participant agreed to speak about her experience with myositis to let others know that they can make progress. It may not be an easy road, but we can persist, and sometimes it works. There are many other ways to manage myositis besides medical treatments. Patients find a real interest in support groups and interacting with each other about our needs in society. We need a medication to cure this illness, but since we don’t have it yet, current medications and supportive environments can be helpful and may allow for improvement.
Following the panel presentations, Ms. Horton turned to the audience for a question and answer session, which can be viewed here.
Myositis Workshop at HSS
Learn more about the Myositis Workshop, a free support and education group held monthly at Hospital for Special Surgery.
Summary by Angela Hunter, LMSW, Myositis Support Group Coordinator