Myositis Online Support Groups
Let’s face it, with a disease as rare as Myositis, the chances of you meeting someone that lives close by is even rarer. Therefore, where do you get the support you need from others who understand exactly what you are going through?
Myositis Support Community!
A partnership with Inspire!
Learn more about the Myositis Support Community, in partnership with Inspire, and join us.
Myositis Facebook Support Groups
MSU began simply as a small Facebook support group called “Polymyowhat: Understanding Myositis.” From there, we made some name changes and added more support groups to include Caregivers, Family and Friends, and the first closed group for those living with Inclusion Body Myositis (IBM), as their needs are different than those of patients with other forms of the inflammatory myopathies.
Myositis Support
The Myositis Support closed Facebook support group for patients is available to anyone diagnosed with any form of Myositis (inflammatory myopathy). We often refer to this group as our “home” group. We discuss many topics related to Myositis and other autoimmune diseases that often overlap with Myositis.
We take a hands-on approach to our Facebook support groups by encouraging our members to share their stories, provide helpful tips and educational resources, as well as adding some humor. We believe, and it has been proven, that laughter is great medicine. We encourage you to join this group for ALL.
Request to join our Myositis Support patient’s group using the button below. Be sure to answer all pre-qualifying questions in order to be considered for admission.
Myositis Caregivers, Family & Friends Support Group
MSU created the Caregiver, Family and Friends Facebook Support group realizing that Myositis patients are not the only ones who need support. Those who care for Myositis patients also need a safe place where they can discuss how they cope with the challenges of caregiving.
We invite all caregivers, care partners, and family members and friends who are looking for support and education to join this group using the button below. This group is NOT for patients.
We also encourage you to join our Myositis Support Community as well. There are huge benefits in joining both groups.
Request to join the MSU Caregivers, Family Members and Friends group using the button below. Be sure to answer all pre-qualifying questions in order to be considered for admission. We do this to protect our members.
Inclusion Body Myositis Support Group
The Inclusion Body Myositis (IBM) closed Facebook support group is the first closed Facebook group specifically for those living with IBM. This group was formed out of a specialized need for IBM patients needing a support group that focuses on the needs of IBM patients.
IBM patients, and their caregiver, can request to join this group. We also encourage those with IBM to join our Myositis Support Community as well. There are huge benefits in joining both groups.
Request to join the MSU closed IBM group using the button below. Be sure and answer all pre-qualifying questions in order to be considered for admission.
Necrotizing Myopathy Support Group
The NAM/IMNM closed Facebook support group is the first closed Facebook group specifically for those living with necrotizing myopathy. The group was founded in 2016 by Bernadette and is now a part of the MSU Family.
NAM/IMNM patients, and their direct caregiver, can request to join this group. We also encourage those with NAM/IMNM to join our Myositis Support Community as well. There are huge benefits in joining both groups.
Request to join the group using the button below. Be sure and answer all pre-qualifying questions in order to be considered for admission.
Anti-MDA5 Dermatomyositis Support Group
The Anti-MDA5 Dermatomyositis closed Facebook support group is specifically for those living with MDA-5 positive DM. The group was founded in 2021 by Benita Moyers and is now a part of the MSU Family of support groups.
Patients, and their direct care partners, can request to join this group. We also encourage you to join our Myositis Support group as well. There are huge benefits in joining both groups.
Request to join the group using the button below. Be sure and answer all pre-qualifying questions in order to be considered for admission.
