Myositis Support options that make sense

Check out Myositis Support Options

We offer support options that make sense for those living with Myositis, a rare muscle disease that causes weakness, among other issues that make it hard to leave the house. We bring the support direct to you!

Support, Education, and new friendships

At Myositis Support and Understanding, we care about you. In an effort to ensure all patients have access to support options that make sense when living with the rare muscle disease, Myositis, we have created several support programs.

MSU got its start through support. We started in 2010 with a small Facebook support group, “Polymyowhat: Understanding Myositis.” From that small group, we have since obtained our nonprofit status and have developed several support options for patients, caregivers, family members, and friends. Our newest support options include our Video Chat support sessions and our newly refreshed website social network.

Support options that make sense for Myositis patients

Join MSU and learn more about Myositis, living with and caring for someone with Myositis, and have a little fun while you are doing so.

MSU Support Options

Facebook Groups

We operate three closed Facebook support groups to help Myositis patients, caregivers and care partners, family members, and friends.

Our Facebook support groups stand apart from the others not only by offering emotional support and much-needed laughter, but also by educating our members to help them learn as much as possible about Myositis so they can effectively advocate for themselves.

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Video Chat Sessions

Extending our online support platform to include Video Support just makes sense. Some may never meet another Myositis patient in person as we are spread around the globe due to the rarity of our disease. Having the ability to talk face-to-face in a video chat will offer a more personalized experience and help to continue building relationships. Have fun and learn more!  Register for video chats that interest you and become a part of the conversation.
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The Myositis Network

The Myositis Network provides our members the opportunity to post updates, meet others with the same conditions, make lasting friendships, join and participate in groups, and much more. This is a great way to learn more about Myositis, through shared experiences.

This can also serve as alternative to our Facebook Support Groups for those who do not wish to be on Facebook.  Just register as a member and your profile will be created!

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See what our members are saying about our support

I have spent many sleepless nights recognizing the commonality we have in such a diversified world of our disease. There are so many ways to live well and choices we have now due to this group. Keeping abreast is the only way for me to make sure I am headed down my path of life with positivism. Thank you, group!

Learning through shared experiences
, MSU Facebook group member

This group has given me so many new friends who are going through the same symptoms that I have. We all can relate to each other on how we feel, whether it’s happiness, sadness, sick, or depressed. I look forward to logging on and talking with everyone

Have made new friendships
Facebook group member

I am a terribly private person, who is not very good at expressing myself, so social media is not something I normally embrace. This page has been a lifeline during the darkest times in my life. When the doctors don’t listen, don’t know, or don’t care, this page has been an incredible source of information. When friends and family can’t possibly understand, this group of people has been an inspiring source of support. At the very least it is a blessing not to feel so alone.

A lifeline in my darkest days
Facebook group member

This group is my go to place. I go here when I’m happy or when I’m sad. I go here to see how my friends are feeling and share in their hope, joy, pain and sorrow. I always find love and support in the light and in the darkness.

Love and support
Facebook group member

This group of wonderful people took me in when was lost and alone and unsure of where to turn with Myositis. They educated me, cared for me and my family. They inspired and supported me and gave me a place to turn in the dark days. They gave me a place to vent when I was down on myself and depressed. They gave me a place to come when I needed to share my accomplishments and cheered me on. There is no way I could repay them for all they have done to give me the spirit to go on. As far as I’m concerned they’re as much of my family as my wife and children. God Bless them all.

Group took me in when I was lost and alone
Facebook group member

I love this group because no one can understand what we are going through except us. When we write negative things, someone out there can relate and it makes the reader know they are not alone. When we write positive things, it gives reader hope. The fact it is online 24/7 and we can connect from all over on our time, in the comfort of our home is priceless. No wasting energy to connect with others. You can sit in your bed and be part of a supportive group. I love this group and have healed a lot through others stories.

Supportive group, always available
Facebook group member

I may not have energy to post everyday but I love reading other’s posts and being a part of their journey. The site is positive when all that’s happening to us can be very negative.

A Positive group
Kim Brooks, DM/Cancer Survivor

There are times when I get up and just need a pick me up from life dealing with DM and this is the one place where I know I’ll find motivation. I don’t know what I’d do without all the wonderful people within this group. It’s hard for me to get my feelings and thoughts about what I deal with to my family and friends, though I know they care, they just don’t fully understand! I love this group so much for being a positive blessing in my life!

One place where I find motivation
Facebook group member

I have DM and this group has given me a place to turn when things get rough. Everyone on this site has a story to tell and they will share their experiences with all. We have cried and laughed together, shared pictures of our pets and families, and given a lot of encouragement to each other.

Encouragement
Facebook group member

This group has helped me thru some dark days.. The people care not only about themselves but everyone else. They don’t judge you or shun you when you are having a bad day and just want to vent. Without this group I would still very alone and isolated in my disease. Jerry and [admins] are such wonderful leaders and a true inspiration to all.

True inspiration
Facebook group member

This group has been a lifeline to me in the midst of so much uncertainty. I spent months muddling through with numerous doctors, stumbling toward a diagnosis. It’s only been in connecting with this group that I’ve felt a sense of hope. These are my mentors, the people who have walked the path before me and walk with me. I can receive and give encouragement and learn so much more than my doctors can tell me. With this group I have a place where I can complain, ask questions and be understood, and know that I am not alone.

Not alone anymore
Facebook group member

Myositis is such a strange and devastating disease. It affects people of different ages, areas of the body and at different speeds. I have found the members of this group to be very helpful in offering their advice to the physical problems that myositis causes.  In return, I too have been able to give advice in many areas I am familiar with. I love this group. Many are like family to me. I am so glad I found this safe haven to call my home away from home.

My home away from home
Facebook group member

I have learned so much from this group and feel I can ask anything even though we have not met,I feel like we all have a special bond of friendship, love and support. I have not felt that anywhere else. Thank you to this group.

Have learned a lot
Facebook group member

I love this group because no one can understand what we are going through except us. When we write negative things, someone out there can relate and it makes the reader know they are not alone. When we write positive things, it gives reader hope. The fact it is online 24/7 and we can connect from all over on our time, in the comfort of our home is priceless. No wasting energy to connect with others. You can sit in your bed and be part of a supportive group. I love this group and have healed a lot through others’ stories.

Understanding
Facebook Group Member

It is so comforting to hear stories of others who were stuck… And overcame! The stories of others who are in the same boat now, of fighting to reduce [prednisone], are strength to me. This group and the people in it… Hero’s to me and my lifeline to deal with something no one gets … But us. Thank you all for making me feel “normal”!

Comfort
Melony Righter

Hope when hope was lost, laughter when there were only tears, company when no one is in the room with you, love when you feel unloveable.

Hope
Facebook Group Member

© Myositis Support and Understanding Association, Inc. 2010-2017. All Rights Reserved. MSU is a 501(c)(3) nonprofit organization.

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Get your Zebra Shirts & Hoodies Today!

Campaign for Myositis Awareness Month, May 2017

Purchasing a shirt from this booster will help us, Myositis Support and Understanding, with our many patient support programs, education, financial assistance for patients and upcoming programs.

This year, 2017, Myositis Support and Understanding’s awareness month theme is “Sometimes Zebras have spots!” We want to raise awareness about how the experiences, symptoms, and complications of this rare disease are different, even among the patients with the same disease. Doctors are now trained, when you hear hoof beats, look for zebras (rarities), instead of horses (common ailments); when in the past, they only looked for the most common ailments.

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Hi, this may be interesting to you: Support! The link is included below: https://understandingmyositis.org/support/ --- Myositis Support and Understanding is a 501(c)3 nonprofit organization.