Patient Association Profile: The Myositis Association
How long has The Myositis Association been in existence? Who does the association serve and what services does it offer?
The Myositis Association (TMA) was started in 1993 by Betty Curry, who was herself diagnosed with inclusion-body myositis and saw a need for education and support. TMA serves its members by providing education and support, and funding research into better treatments and ultimately a cure.
What are some of the things you do for The Myositis Association? How and why did you become involved?
I am the communications manager and write and edit many of TMA’s website and print resources. I also schedule our live discussion series with myositis experts, maintain social media, plan the conference content and refer members to appropriate resources as needed. I was actually recruited by the founder, Betty Curry. I was a health and features reporter working for a daily newspaper when she asked me to consider writing the quarterly newsletter and website content for her young organization. I was interested in the field of autoimmunity as my sister had just died from a lifelong struggle with an unspecified autoimmune disease.
What are some of the services that you feel are most needed among myositis families and patients?
Better diagnoses. Myositis patients are not alone among people with autoimmune disease in struggling for weeks, months and even years to get a correct diagnosis. Early diagnosis is crucial, even life-saving. People who are treated early on have a much better outcome generally. By the same token, people who are given powerful drugs that do no good in their particular case are harmed. We work constantly to educate physicians. We’ve had great success with a new program where myositis experts visit young health professionals. We’ve even recently had a board member with myositis volunteer for teaching rounds at a medical school.
Better treatments. The drugs presently available have many alarming side effects, and one form of myositis does not have any known treatment. We’re proud of our research program that funds fellowships for young doctors and grants for established researchers. In the last 12 years, TMA has funded 37 research projects directly related to myositis, for a total of $5 million. This year, several bequests have allowed us to increase our research funding.
Better information. This is an exciting time for autoimmune diseases, as we’re finding out more and more about environmental factors and lifestyle effects. For instance, as recently as 10 years ago, myositis patients were advised not to exercise, to avoid stress on already weakened muscles. In the last several years, researchers have found that exercise not only strengthens inflamed muscles but also has a systemic effect on inflammation. We take our role of keeping members up to date very seriously.
Myositis refers to inflammation of the muscles. It can be caused by injury, infection, or autoimmune disease. The three main types of chronic, inflammatory myopathy are polymyositis, dermatomyositis, and inclusion body myositis.
Symptoms of myositis may include:
- Muscle weakness
- Fatigue after walking or standing
- Tripping or falling
- Trouble swallowing or breathing
Doctors may use a physical exam, lab tests, imaging tests and a muscle biopsy to diagnose myositis.
The chronic inflammatory myopathies cannot be cured in most adults but many of the symptoms can be treated. Options include medication, physical therapy, exercise, heat therapy, orthotics and assistive devices, and rest. Polymyositis and dermatomyositis are first treated with high doses of corticosteroid drug.
Source: National Institute of Neurological Disorders and Stroke
What do you think are the most important things for the newly diagnosed and their families to know?
Getting support from veteran myositis patients and good referrals to established myositis experts: both are of crucial importance that can greatly influence the course of the disease. We try to connect the newly diagnosed with both of these resources. We also provide as much information as we can on our website at www.myositis.org; in the hope that the newly diagnosed will begin with some knowledge of the disease.
What do you think the biggest challenges are for myositis patients and their families?
One of the biggest challenges for the patients we see is the sense of isolation. Not only are they going to physicians who may never have seen a case of myositis, but most likely they have never met another person with the same disease. We have accomplished a lot with our support groups and provide many other ways for patients to be in touch with each other and share knowledge – through social media, through our website forums, and through our Annual Patient Conference, which will be in Orlando Sept. 10 to 13 this year.
Do you refer patients to clinical trials?
We let our members know about clinical trials as soon as we know about them. Typically, researchers will come to us when they want to find myositis patients for potential studies.
What is most important for people to know about inflammatory myopathies?
I think the most important thing for the general public to know about all rare diseases is that collectively they take a huge toll in productivity and health care costs. The National Organization for Rare Disorders estimates that one in 10 Americans has a rare disease. We need to support research into these diseases and recognize those who struggle with them.
You will do better if you find a community that understands and supports you. The Myositis Association (TMA) provides many options for support.
Those with myositis face the difficulty dealing with a chronic illness, plus the extra challenge of having a rare disease. Because the disease is so rare, it’s hard to find others who understand what you are going through and the challenges posed by myositis. TMA helps resolve this problem through its Keep In Touch (KIT) member support network. KIT groups offer members the chance to join with others in their area and share mutual support, friendship and ideas.
TMA members often post remarks on the Community Forum about physicians they find especially helpful, coping strategies, or side effects experienced from particular medications. There is a Forum for each type of disease as well as a general Forum at TMA’s website.
Alternatively, TMA has an Ambassador program available for new members which is less formal than participating in a support group but gives new members the opportunity to speak with another member of TMA who has myositis and might be able to share some insights with you.
To speak with one of TMA’s ambassadors, email [email protected] or call 1-800-821-7356.
The Myositis Association
1737 King Street Ste 600
Alexandria, VA 22314
www.myositis.org
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