My pretty cool looking “normal brain”

I got another batch of information back from my week at the National Institutes of Health, and I really think my favorite quote ever was “patient has a normal brain”… good to know! Other fun stuff: they couldn’t find a seventh cranial nerve (which doesn’t necessarily mean it’s not there – they did an autopsyContinue reading “My pretty cool looking “normal brain””

Bursting the Happy Healthcare Bubble

  When you are at the NIH Clinical Study for a Natural History Study, your healthcare life is pretty darn good (well, besides the fact that you have medical stuff going on that landed you there in the first place!) Every doctor you see in the course of your study protocol is an expert. EveryContinue reading “Bursting the Happy Healthcare Bubble”

Rare Disease Day: Think Zebras

Yesterday was February 29, the rarest of all Rare Disease Days. I was lucky enough to actually be there in person at the NIH (yep, another day at the Clinical Center!) for the first time.    The sessions started off with a crazy-proud moment when Dr. Francis Collins mentioned the Moebius syndrome research study I justContinue reading “Rare Disease Day: Think Zebras”

NIH Day 2: I get lost in these halls

(That is a line from Next to Normal, an amazing musical about family and chronic mental illness, if you’re at all interested in theatre relating to these issues you should check it out!) Today started out with a fasting blood test. Yay (said nobody ever). Stumbled my coffee-less self to phlebotomy where they proceeded toContinue reading “NIH Day 2: I get lost in these halls”

NIH Day 1: Hello (from the inside of the MRI)

Day I of research protocol began very early Monday morning at the Admissions office of Building 10 (The NIH Clinical Center) trying to beat the morning rush of people checking in. Got myself an ID bracelet with a barcode, and was bombarded by lots of information about consent and information and such. Was fast enoughContinue reading “NIH Day 1: Hello (from the inside of the MRI)”

NIH Day 0: Travel

Got up at the crack of dawn California time, just in time to see a gorgeous Bay Area sunrise on the way to the airport:   We thought we had a full flight, but then found this strangeness next to me – Cassius appreciated the extra room!   Made it through the flight and an e-book glitchContinue reading “NIH Day 0: Travel”

This is a song, for all the good people…

NIH Director Dr. Francis S. Collins at the 10th Moebius Syndrome Conference Honestly my favorite part of the 2012 Conference. I totally teared up. Hope he can make it again to DC this year. Today is Rare Disease Day, and this song sums it all up for me quite succinctly. It’s about the people I’veContinue reading “This is a song, for all the good people…”