Profiles of Strength: Julie & Charlie, Living with sIBM

Disease awareness video on sporadic inclusion body myositis (sIBM) featuring the perspectives of patients, their caregivers and an expert clinician. sIBM is a rare and debilitating disease with no treatments. The disease causes gradual and relentless muscle wasting, loss of strength, loss of mobility, inability to swallow, and can lead to death. This video is now available with the following subtitles: French, German, Italian, and Spanish.
How to activate subtitles:
On the bottom bar, look for the “Closed Captioning” icon “CC” and click on it to activate the subtitles.
Next to this icon click on the “settings” button to select your language.
The subtitles will be displayed at the bottom of the video.

[@Adrienne79]

My husband was diagnosed with IBM 2 weeks ago by this very doctor in the video. It's been very emotionally overwhelming. My husband falls into the percentage of those it would not normally affect & he's just 40. I'm hopeful for a cure in Jesus' name.

[@kenduncan2860]

My husband died 3 years ago with this disease. I pray for those diagnosed with this horrific disease and big prayers for those who care for them....it is so hard. Blesses to you Adrienne79! Ken didn't write, he is not here...I'm his wife, Carolyn

[@KMx108]

Thank you for sharing this. It's important for people to know this isn't just for those over 50.

[@CanterburyTalesBookshop]

I was diagnosed some years back, am 62 now and as well as the IBM is all the other complications that follow, now in a wheelchair - cannot walk at all, suffer from terrible gout, stomach problems from the gout medication, sleeping also a nightmare, so uncomfortable as on the bones of my arse, take painkillers to get through the day.

[@speedoflite1]

Peter Frampton's big reveal, recording furiously; next tour will reportedly be his last =/

[@wlopezable]

I was diagnosed with IBM today although I had symptoms for the past 14 plus years.

[@AliAli-jn3cr]

Hoping you doing well

[@dvdoc1458]

Julie, you are and inspiration. It is really hard for me to say this next thing but I think your husband is also. Hang in there both of you.

[@myositissupport]

You are all such an inspiration! It is a hard diagnosis and even harder life once IBM progresses. This video is an excellent resource to help others understand more about IBM. Our organization has multiple, closed, Facebook groups for IBM support. www.Facebook.com/groups/inclusionbodymyositis #inclusionbodymyositis

[@dianekunz3729]

9 years in already and in wheelchair now 100%, can't walk

[@AliAli-jn3cr]

How were early symptomes, did you have atrophy and pain muscles