Fantastic news for us orphans.

As someone who suffers from a classified “orphan” disease (Wegener’s) — something so rare that less than 6,000 people in the US are diagnosed with it each year — I seldom see much news in the progression of treatment for it.

So you can imagine how stoked I was when I saw this: After 40 Years, NIH-Supported Researchers Identify Possible New Treatment for Severe Vasculitis

Stoked to say that I may have a small part in this research as I’ve kept my symptoms under control with anti-TNF meds for a few years now (knocking on wood as writing...).

Cheers and happy Friday to this news. More here: NIH.gov

Image from the University of Miami, Department of Radiology

Sharing: Crohn's and pregnancy.

Love this thoughtful and auspicious post from Mary Diderrich — a Registered Nurse at Mayo Clinic in Rochester, New York: Crohn’s and pregnancy

Mary, who has suffered from Crohn’s for 12 to 14 years, just had her second healthy baby and needed no meds throughout her pregnancy.

More on “Sharing Mayo Clinic” here: sharing.mayoclinic.org

Healthy social media.

If you’re reading this then you already know how much social media can promote some the best things web-based health has to offer. Alex Howard is right there with you. Check out his great piece on social media health trends: 5 Ways Social Media Helps Promote Good Health

Mentioned in Howard’s post — this is a few months old, but fascinating still — the Pew Research Center’s report on Chronic Disease and the Internet: pewinternetreport.org/chronic-disease

One very interesting morsel: U.S. adults living with chronic disease are significantly less likely than healthy adults to have access to the internet (62% vs. 81%).

Acuminous art.

Special thanks to my colleague Tom for introducing me to Klari Reis and her artistic talents. Reis, who also suffers from Crohn’s, combines a science background and an empathic doctor to not only understand the drugs at work in her own body—but to exemplify the unique beauty of every petri dish she could get her eyeballs on.

The work truly speaks for itself, so check out her site, her blog and this super cool video cataloguing a recent installation of her work in Shanghai.

Dance medicine.

In mid-August, I’m going to have another surgery experience under my belt (literally)—arthroscopic knee surgery.

Yep, I knew I was in real trouble when I truly couldn’t fully pliè in ballet class, let alone sleep without pain for nearly 9 months (and this was after trying everything including no leg exercise/impact for almost 3 weeks). Sigh.

As I survey the landscape of what the surgery and recovery will look-like at my hospital—UCSF—I was stoked to see that they genuinely understand what a relevè is. As in, “It hurts very badly to do a relevè.” They have their own dance medicine center: orthosurg.ucsf.edu/patient-care/dance

The center is run by a former professional dancer and while she’s not my surgeon (I’m farther from a pro-ballerina than Vince Vaughn) I love that they have this available.

More here: Integrating Arts and Medicine

Photo by Treivilo.

The House effect.

I’m not much of a TV watcher, but I’ve recently been watching some episodes of House. For you medical TV-drama neophytes, I’ll fill you in: model-worthy medical students and doctors with an unconventional/genius boss, Dr. Gregory House, at a teaching hospital. Very similar to that of ER, Grey’s Anatomy, and the like (and very addictive—which is why I don’t watch TV much—I don’t have the moderation gene).

All of Dr. House’s cases seem to be rare and exciting. So rare that oftentimes when people find out I have Wegener’s they immediately reference several episodes. The not so glamorous aftermath however, never seems to be a part of the script. My favorite typical House med-student line is, “It’s chronic, but the symptoms are treatable.” End of episode, cue the credits and top-40 hit. Hmmmph.

A reader (thanks Sarah P!) sent me this article a few months back, and the more I watch these shows, the more I consider it: The House Effect: Are People Misled by TV Docs?

Talk about a wealth of engrossing facts. To start, researchers cataloged 50 episodes of House and Grey’s Anatomy between fall 2005 and spring 2006. Of those, less than one-third of doctor-patient interactions conformed to real-life standards.

That’s not too surprising to me—my doctor-patient interactions would not warrant much TV time unless you wanted to watch The Nap Time channel. Wait, that’s actually a good idea...

Check out Tiffany O’Callaghan’s article here: time.com/health