I’m cruising You Tube looking for videos to update the awareness videos on the sidebar here. The first video that pops up when searching ‘dermatomyositis’ is the same one that popped up I don’t know how many years ago. I got frustrated when I viewed it now, just like I did when I viewed it a few years ago. If I was a person to rely on one You Tube video I’d be severely misinformed. That’s the ONLY thing that saves me from blowing a blood vessel; knowing that most people will keep searching and reading to find out about something that they’re interested in.
She describes it to feel like ‘a mild flu’, oh brother to that one. Then, the interviewer asks her about the outcome and she paints such a rosy picture! She says ‘it’s usually about 2 years for the complete treatment of dermatomyositis’…whaaaa??? I want to go to wherever she’s at…she also says in most cases after putting it into a ‘quiet state’, which would be remission, it doesn’t usually come back. Again, where is she getting this from? Periods of remission may happen, they may not. There’s no ‘usually’ or ‘mostly’ as to it staying gone…sigh. I’m not trying to ‘fatal-ize’ this disease, I only wish that people in places of authority would state the facts. It’s irresponsible not to.
We need a cure. We need research, and research funding. We need enough people to care about a disease that’s rare. It still affects people, it still disables people, and it still kills people. People with DM are at a higher risk for developing certain cancers; cervix, lungs, pancreas, breasts, ovaries, and gastrointestinal tract. [mayo clinic] Interstitial lung disease is seen in 20 to 80% of patients with DM, depending on many different factors, with ILD being a major cause of morbidity and mortality. [ILD in DM and PM]
Here’s a really good informative video. It’s definitely not ‘user friendly’; it’s a technical video for teaching purposes. Lots of facts though. But still, if you’re not up on your medical terminology you might miss a lot of good info.
I’m still on a mission to find some informative, short, layman-speak vids. I might end up making some. We’ll see. 🙂