Myositis Video Support, Activity, and Education Sessions

One of our goals here at MSU is to ensure our members, patients, and caregivers get the education and support they need. Aside from our three closed Facebook support groups, we also offer Online Video Sessions for support, education, and activities. Sessions are created and designed to be interactive where you are able to ask questions and share your knowledge and understanding.

Some of regular, ongoing Video Sessions we provide are listed below. We want you to get as involved as you are able. If you have a topic and/or would like to lead a Video Session please contact us and let us know.

Support is how we got our start, long before we were a non-profit organization. And now as a patient-centered nonprofit, we continue to find and build new ways to provide the support patients and caregivers need and deserve, and ways to make it easy when living with a debilitating muscle disease that makes leaving the house difficult.

We have monthly video support sessions for patients and quarterly for caregivers, family members, and friends.

Our Patient Support Sessions may be the very first time someone ever sees and talks to another myositis patient in person!

The Monthly IBM Video Support Session is tailored to those diagnosed with, or suspected of having, Inclusion Body Myositis (IBM) also known as sporadic Inclusion Body Myositis (sIBM).  We ask that only IBM patients join this session.

Most sessions are open discussion where you are able to talk with others living with the same disease and going through the same struggles and experiences as you. You can talk to other patients face-to-face, ask questions, share your experiences, and make new friendships.

At times, there will be a specific topic of discussion chosen ahead of time.

These are patient-led sessions. If you are interested in leading a session, please contact us and let us know.

The Monthly Myositis Patient Video Support Session is tailored to those diagnosed with, or suspected of having, Polymyositis, Dermatomyositis, Necrotizing Autoimmune Myopathy, Juvenile Myositis, and other unspecified or nonspecific idiopathic inflammatory myopathies (myositis).

Most sessions are open discussion where you are able to talk with others living with the same type of disease and going through the same struggles and experiences as you. You can talk to other patients face-to-face, ask questions, share your experiences, and make new friendships.

At times, there will be a specific topic of discussion chosen ahead of time.

These are patient-led sessions. If you are interested in leading a session, please contact us and let us know.

It boils down to patient needs and likely topics to be discussed. The needs of IBM patients vs. other inflammatory myopathy patients tend to be different.

For IBM, there are currently no treatment options available and IBM is a more progressive disease affecting the distal muscles. IBM patients will usually require a wheelchair or powerchair at some point as remission is currently not something IBM patients will likely experience.

For those with idiopathic inflammatory myopathies other than IBM, discussion tends to focus around treatment, treatment side-effects, remission and flares, upcoming clinical trials for PM/DM, and other related experiences that are different for these types of myositis.

Both our IBM and our Myositis Patient video support sessions are non-medical, patient-led, mostly open discussion sessions where you can share experiences, ask questions, compare notes, and make new friends.

The Quarterly Myositis Caregiver Video Support Session is tailored to myositis caregivers, family members, and friends and offers them a place to meet others face-to-face and discuss various topics surrounding what life is like for them having a loved one with any form of myositis.

These are usually caregiver-led, open discussion sessions.

If you are interested in leading a session, please contact us.

Education is a part of our mission and we take it seriously. We host both patient-led and expert-led education sessions; both have valuable information.

Expert-Led education sessions are exactly what they sound like. Whether it is a formal webinar or a more relaxed question and answer session, we bring myositis experts, and others in related fields, into your home through our Video Education Sessions. These are always free to join. No travel required! These sessions are recorded as well so that those unable to attend can get the information.

Most of these sessions require registration.

Patient-led educational sessions are hosted by patients who have done research, or through advice from a specialist, have implemented their findings into their lives. They are willing to share their experiences related to the topic using our online video education sessions. They are willing to answer questions and open the session up towards the end for others to share their experiences with the related topic. Learning from the experiences of others is something we have found to be beneficial when living with such a rare disease.

Our Online Video Sessions are live, in real time and only recorded if noted.

Sessions, unless hosted by a physician or other certified or registered healthcare provider should not be mistaken for medical advice. Always consult with your physician and your healthcare team prior to starting any new exercise program, making any changes to treatment, and adding or changing supplements.

The views, opinions and positions expressed by contributing authors and our video, audio, and social networking hosts and those providing comments on UnderstandingMyositis.org or through our video support, education, and activity sessions, are theirs alone, and do not necessarily reflect the views, opinions or positions of Myositis Support and Understanding Association or any volunteer, board member, or employee thereof.

Just as with support sessions, we use the same online video platform where you can learn new things, participate in group activities, and more. These sessions are growing and there will be more activities available in 2018.

Our Laughter Yoga Video Activity Sessions are led by Laugher Yoga Instructor and Myositis patient Lynn Lizarraga.

Each monthly session is different. If you are not sure what Laughter Yoga is, join us and find out! Or, check out this article Lynn wrote to help explain it.

These sessions are open to everyone: patients, caregivers, family members. and friends. A great activity to get you moving around, provides light exercise, and tons of laughter which helps several muscle sets and improve your mood.

Why types of activities would you like to do together with other myositis patients? We would love to hear. Just contact us and let us know and let us know if you would lead the session!

Joining is easy and free! For video, you must have a webcam. Sessions can be accessed from most any device including tablets and smartphones.

Be sure to add these email addresses to your safe senders or contacts list in the email client you use to help ensure our emails do not end up in your junk or spam folder.

Add no-reply@zoom.us and info@UnderstandingMyositis.org to your contacts or safe senders list