The Liz Army:
A blog
Patient. Patient advocate. Researcher. Student.
There are more than 500 posts here. Use this search to look for something specific. Good luck!
A note about my oldest posts: I began blogging about brain cancer in 2008, at age 29. I had no background or knowledge about healthcare when I started. Please excuse typos and other misconceptions. What you read here is me in real time, like a time capsule.
UPDATED: I attended TEDMED
Liz Salmi goes to TEDMED on a scholarship. It has been said that the most underutilized resource in health care is the patient. Let’s break this barrier!
Transcript of my talk at Stanford Medicine X
This person who gave me almost nothing in life has given me so much more with his death. And for this, I am thankful. So there is no reason to be sorry for my loss.
Who's got my back? Watching the MedX livestream
The essence of Medicine X is that everyone is included in the conference design.
Watch The Open Patient documentary
I am not a doctor. I am not a researcher. I am not going to come up with the cure for cancer on my own. But as a citizen scientist I can play an important role by sharing my experience with you, the reader of this blog.
Defining enthusiasm
I've lobbied Congress on chemo drug parity. I helped start a Twitter community for people with brain tumors. I changed my career to put me in direct connection with leaders in health care. Immediately after my dad's diagnosis I enrolled the two of us in a familial study of gliomas. I obsessed over the release of the 2016 WHO Classifications of Tumors of the Central Nervous System. I declared to anyone who gives a shit that "I am the open source patient," and I am happy to share my personal health information if it would possibly give a researcher a leg up in the study of this disease.
Hacking the hospital death
No offense but dying in a hospital is the worst. We don’t have time to get him home, so what else can we do to make this a better experience?
Meta Open Source: Open sourcing my blog post about "I am the open source patient"
A little over one year ago I wrote a blog post declaring that, "I am the open source patient." Little did I know a few months later I would be contacted by RedHat--a mega distributor of Linux-based services... and they were working on a mini-documentary about open source and healthcare.
Virtual visit with my dad's neurosurgeon
Because I am a curious person (and have learned that my dad is also a curious person), I asked the doctor if it was a good idea to get a biopsy of the tumor. The surgeon said that they could do a biopsy, but other than satisfying our curiosity, what good would it do? It might do more damage to him than good. And while we are curious, we should weigh our options on what matters most... Which to me (and hopefully to my dad) means quality of life.
Dear everyone with an oligoastrocytoma: Your diagnosis just changed
As more and more pathologists and doctors begin treating patients based on the genome of their tumor it only makes sense for the WHO to update their classification of CNS tumors. Because science.