I’ve been saving so many articles thanks for facebook’s saved links feature that it’s time to dump them all!
Perhaps the most pressing and scary thing I’ve read in a while is this piece on mortality in systemic JIA. SJIA kids are five and half times more likely to die due to complications arising from our illness than our non-systemic JIA counterparts.
I don’t even know what more to say about that.
There are also certain genetic variations that not only predispose people to autoimmune arthritis but could also point out the course of the disease – including if you could die prematurely.
Let’s move to something more fun. Have you seen these cute empathy cards for serious illness??
They’re adorbs and I need to buy all of them like now.
Is there a problem with tracking patient satisfaction in their care? Alexandra Robbins seems to think so. She argues in this piece that surveys like the HCAHPS for hospital care mislead doctors into believing that they’ve really helped the patient when it ends up turning into a popularity contest.
If you’d have asked me six months ago, I don’t think I would’ve given this article much thought. Now, though, I see the popularity contest in the numbers for the docs I work with. Some of the highest rated docs have horrible preventative medicine metrics. Are they being rated highly because they aren’t pushing patients to get their best care to prevent issues in the future? It could be.
Of course that’s a little misleading as I work with primary docs and not in the hospital, but it’s the same sort of idea isn’t it?
I found this piece on plaque psoriasis by Jonathan Scott of the Atlanta Falcons interesting. It’s not often we see football players speaking out about health issues unless they directly relate to football… unless of course you count the months of pink out to raise tons of money for a poorly managed cancer organization.
It’s been 25 years since the battle to get the Americans with Disabilities Act (ADA) passed. Here’s a review of what has changed from the eyes of someone who was actively involved in protesting. I think my favorite part of the whole article is when he talks about where our problem areas still lie. Children, soldiers, and those with mental illnesses face more stigma than some with less resources to help. There is also the socioeconomic and racial aspects to things.
This is a little on the late side, but this TED talk from Pediatrician Elliot Krane at Stanford University is incredibly interesting. In it, he discusses chronic pain using an allodynia in a teenage girl. His frustration is how difficult it is to treat this pain. We use drugs to cover up the symptoms along with various therapies to treat chronic pain.
Speaking of pain, there is currently a trial in the works to see if sea anemones can help stop white blood cells from freaking out and thus treat autoimmune diseases. It’ll be interesting to follow this and other surprising new medication options.
Autoimmune diseases seem to be being diagnosed more lately. Is it an epidemic? Personally, I don’t think so. I think we’re getting better at recognizing signs, testing, and treating these diseases. AARDA got some great exposure in that piece regardless.
Ever get frustrated with how little people are interested in hearing your story unless you’re possibly dying quickly? You’re not alone. And the frustrations with those who advocate holistic approaches without knowing anything about your illnesses? Yup.
Did you see that Phoenix replaced their accessibility symbol?
I love it. There has been a push for quite some time to get this adopted internationally as it emphasizes ability rather than disability. Hopefully this change helps the movement gain traction.
There have been so many stories lately about people putting notes on cars in lots accusing the driver of not being worthy of utilizing the accessible parking. Here’s the latest one. And for good measure, here’s a great story about a woman dealing with shopping for her wedding dress while having a port, causing raised eyebrows and jerky responses.
Have I said how much I dislike people sometimes?
Ugh.
Maybe all these note leavers need to read this comic which discusses how hard it is to live with invisible illnesses.
Or maybe they need to learn the nice things to say to someone with a chronic illness.
It also probably wouldn’t kill them to read up on helpful things to do when someone they know is pretty ill.
What post about the medical world would be complete without Doctor Who quotes?