Myositis - Online Support Group
We are patients affected by myositis, here for your support.

Since others have subsequently asked about organizing groups and meetups in their area, the moderators and I have decided to create this forum discussion so the community can throw out ideas and…Continue
Started Dec 19, 2011
Apologies, this is a re-ocurring problem. I've found that if I scroll down on the page farther, creating 2 inches between the "Send" button and the bottom of the browser window, then it works. When…Continue
Started Aug 13, 2011
A member of our sister site http://www.ChiariSupport.org posted a tutorial on how to make our community easier to find on the internet by linking to us from…Continue
Started Jun 28, 2011
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Added by Ben Munoz
Dear Friends and Family of MyositisSupport,
We are so excited we cannot wait to tell you about how our organization is growing, so we’ll go straight at it. We are please to tell you that collectively our patient communities have reached four consecutive monthly peaks in all aspects of our activities, overshooting even the targets we have set ourselves two months ahead!
Here are some highlights:
Total members for all communities at the…
ContinuePosted on May 26, 2012 at 7:00am
Dear Friends and Family of MyositisSupport,
April – the smell of spring in the air!
Spring brings a lot of positive notes: it signals growth and rebirth. As Ben’s Friends, our patient support group is growing real fast. As a member community, you’ll see stats on how we contributed to this growth as reported below. Be assured that no matter how small the contribution may be, it adds up and it is very much appreciated!
Our presence is being felt…
ContinuePosted on April 21, 2012 at 10:00am
Dear Friends and Family of MyositisSupport,
February brought us great strides as our various communities of rare disease support groups gathered the largest number of new memberships of all time! The volume of blog posts, comments and discussions also increased. We at Ben’s Friends commend you all for your active support of our communities!
IN THIS …
ContinuePosted on March 23, 2012 at 1:18am
Dear Friends and Family of MyositisSupport,
As you well know, living with myositis can be very challenging not only for you but to your families as well. This organization was built with a view to helping you and your families to live up to this challenge by linking you up with people who share similar experiences and have succeeded in maintaining a positive outlook!
Explore more how our community had helped members face the…
ContinuePosted on February 22, 2012 at 11:00pm
Heather Brown said… Thanks Ben. I am still trying to get my head round things and feel my husband is luckier than most other people out there. I have read some of the stories & my heart goes out to everyone suffering this terrible illness. At present my husand is not in the same position as so many other people. He is still coping with the frustration of trying to get people to understand how he is feeling. We are hoping it will not get any worse.
Huda said… Thanks Ben. So nice of you :)
Donna Calkins said… Thank you, I need the support. I feel like a fish out of water trying to help my child.
Denise Hribar said… Hi and thank you. I hope I can learn something about this disease, but more important, I hope I can learn how to deal with it emotionally. Any advice?
Steve Morgan said…
Maren Holzinger said…
dee pope said…
T.Weikel said…
Bernadette Faith Stancliff (Fay) said…
Darlene Eschete said… This community is part of the Ben's Friends network of patient communities. Learn more at bensfriends.org.
Patient Communities
Acute Disseminated Encephalomyelitis (ADEM)
ADHD/ADD
Adrenoleukodystrophy (ALD)
Amyloidosis
Arteriovenous Malformation (AVM)
Ataxia (International)
Ataxia (U.S.A.)
Atrial Septal Defect
Brain Aneurysms
Charcot Marie Tooth (CMT)
Chiari Malformation
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)
Crohn's Disease
Disabilities
Eagle Syndrome
Erythromelalgia
Fabry
Fibromyalgia
Glossopharyngeal Neuralgia(GPN)
Lupus
Multiple Myeloma
Myositis
Narcolepsy
Primary Sclerosing Cholangitis (PSC)
Psoriatic Arthritis (PsA)
Synovial Sarcoma
Trigeminal Neuralgia (TN)
Von Willebrand's Disease (VWD)
Other Rare Diseases
Dear Friends and Family of MyositisSupport,
We are so excited we cannot wait to tell you about how our organization is growing, so we’ll go straight at it. We are please to tell you that collectively our patient…
ContinuePosted by Ben Munoz on May 26, 2012 at 7:00am
OUR ONLINE PRESENCE IS GROWING!!!
Check out this link to view Ben's Friends FB-Twitter Milestone.…
Posted by Armando Abrero on May 22, 2012 at 7:06am
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