- This event has passed.
IBM Patient Video Support Session, April 2018
April 27 @ 5:00 pm - 7:00 pm EDT
IBM Patient Video Support Session
IBM Patients, mark your calendar and join us for this free non-medical, patient-led, open discussion video support session with Mary Jane. Join to share experiences, ask questions, compare notes, and make new friends. See details below on how to join by video.
When: Friday, April 27th, 2018, 5PM Eastern (4PM Central, 3PM Mountain, 2PM Pacific)
Where: Online – Join us from wherever you are at the time. No need to dress to impress. Join in your pajamas if you want.
Add to your calendar: Visit our events calendar where you can copy this event to your calendar! https://understandingmyositis.org/events/calendar
Joining from outside the U.S.? Use this timezone converter:Â https://savvytime.com/converter
Meeting ID if requested: 556-588-616
About joining this free online session
You do NOT have to register. Simply click the button above on Friday, April 27th a little before the start time of 5PM Eastern (4PM Central, 3PM Mountain, 2PM Pacific) to join the IBM Patient Video Support Session.
About the IBM Patient Video Support Session
This session is tailored to those diagnosed with, or suspected of having, Inclusion Body Myositis (IBM) also known as sporadic Inclusion Body Myositis (sIBM).
In addition, we have a separate dedicated video support session for those with Polymyositis, Dermatomyositis, Necrotizing Autoimmune Myopathy, Juvenile Myositis, and other unspecified or nonspecific idiopathic inflammatory myopathies (myositis).
Why do we host these sessions separately?
The needs of IBM patients vs. the other inflammatory myopathy patients tend to be different.
For IBM, there are currently no treatment options available and IBM is a more progressive disease. IBM patients will usually require a wheelchair or powerchair at some point as remission is currently not something many IBM patients will 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, open discussion sessions where you can share experiences, ask questions, compare notes, and make new friends.
For some, this will be the first time ever seeing another myositis patient in person!
