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?
The MSU Myositis Network
When you register for membership here on our site, we create a MSU Myositis Network profile for you. This is one of the benefits of free membership.
The network is new and just now getting its footing. We are working to improve this feature! If you are a registered member, there are several ways to access the network. At the very top of each page, you will see an avatar. It may just be a gray image right now. Click that to access your MSU Myositis Network account. There you can click on settings and change your image, create a cover background image, change your password, update your information, post to the activity page, find other members, and so much more.
This beats a forum atmosphere as you can interact with other members in real time! Get started today. If you are not a registered member of MSU, simply click here to register.
If you are a registered member, visit your network profile page now and share something with the other members!
(If you need help learning to use the MSU Myositis Network, visit our Network Help page.)
Facebook Support Groups
MSU began simply as a small Facebook support group called “Polymyowhat:Understanding Myositis.” From there, we did some name changes and added more support groups to include Caregivers, Family and Friends, and the first closed group for patients with Inclusion Body Myositis (IBM), as they have different needs than those with Polymyositis and Dermatomyositis. We are very hands on in our groups to ensure you get the best possible experience.
Myositis Patient Support Group
The Myositis Support and Understanding (MSU) closed Facebook group for patients is available to anyone diagnosed with a form of Myositis. We often refer to this group as our “home” group. This group continues to grow daily. 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 humor. We believe, and it has been proven, that laughter is great medicine.
Request to join our patient 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.
Myositis Caregivers, Family & Friends Support Group
We 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.
The Caregivers, Family and Friends group keeps the same “family” dynamic and is a closed group so only group members can see what is posted. We have a few patient advocate’s in the group to help the members with questions they have from a patient’s perspective and this has seemed to help keep the group active and growing. This group is NOT for patients.
We invite any caregiver, care partner, and family members and friends who know and wish to support or learn more about Myositis, to join this group using the button below. Knowledge is power.
Request to join our 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 closed Facebook group we created is the first closed Facebook group specifically for IBM patients. This group was formed out of a specialized need for IBM patients. While IBM patients are also welcome in the “home” group, IBM patient’s do not respond to or have any treatments available like those for Polymyositis and Dermatomyositis. And, treatments, such as prednisone, are one of the most talked about topics in the “home” group. Now IBM patient’s have a closed group where they discuss topics that are IBM specific.
IBM patient’s, and their caregiver can request to join this group by using the button below. We also encourage IBM patient’s to join the “home” group as well. There are benefits in joining both groups.
Request to join our IBM 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.
MYOSITIS SUPPORT GROUPS
Myositis Support Groups
Below are some Myositis Facebook Groups. A closed group means your posts only stay within the group and are not posted on your personal wall. With open groups, posts are found on your personal wall as well as within the group.
NOTE: MSU is not responsible for the content or actions of other groups.
Related Support Groups
The groups below are for family members, caregivers, and friends of someone with myositis. We started the Myositis Family & Friends Facebook group to provide our loved ones with a safe place for them to discuss their needs as a caregiver and to support each other. We hope you will invite your family and friends for them to learn more about myositis.
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