11:25 - 11:30 amSaturday, September 28
Plenary Hall
Dispatches from the outskirts of medicine.
Plenary Hall
Dispatches from the outskirts of medicine.
Co-founder, FeelAlike
In an ignite talk, the participant is given five minutes to speak about their ideas and personal or professional passions, to "ignite" the audience on a subject, i.e. to generate awareness and to stimulate... Read more

Description

In an ignite talk, the participant is given five minutes to speak about their ideas and personal or professional passions, to "ignite" the audience on a subject, i.e. to generate awareness and to stimulate thought and action on the subjects presented.

About the speaker

I have lived two lives. In the first life I was a confident, super-energetic young man that could do anything. In my second life, my activities were constrained and largely defined by a chronic condition. I didn’t just have poor health, I had a condition that was so rare that no doctor had ever heard of it, and so personal that I couldn’t explain - even to people close to me - why I was struggling.

Because of these constraints I suffered without relief for years. I didn’t just suffer alone, I also didn’t seem to fit anywhere in the medical community. Medicine works great for known conditions, but I was having no luck breaking in. Occupying the outskirts of medicine, I had a chance to rethink what I really needed. It wasn’t much. Just to connect with people having my same condition and find out what treatments worked for them. That shouldn’t be too tall an order in today’s hyper-connected world.

I finally discovered the name of my condition in 2011 after two major research papers were published and gained mainstream media attention. I soon joined and became a leader of an online community of fellow sufferers. With the support of my comrades in arms, I began to find relief with self-administered immunotherapy. Now having some extra energy, I used my background in software development to build a web app that would allow ePatients with any condition to connect, share solutions, and feel comfortable being their real selves. I wanted to realize my dream of a future where no one - regardless of how rare or personal his or her condition - would suffer alone. A future where treatment ratings and reviews were as freely accessible for medical treatments as they are for restaurants and books. The web app is called FeelAlike, and I think it’s a decent start.

I’m very excited to be attending MedX to learn more about ePatient advocacy and how to empower ePatients.

I have lived two lives. In the first life I was a confident, super-energetic young man that could do anything. In my second life, my activities were constrained and largely defined by a chronic condition. I didn’t just have poor health, I had a condition that was so rare that no doctor had ever heard of it, and so personal that I couldn’t explain - even to people close to me - why I was struggling.

Because of these constraints I suffered without relief for years. I didn’t just suffer alone, I also didn’t seem to fit anywhere in the medical community. Medicine works great for known conditions, but I was having no luck breaking in. Occupying the outskirts of medicine, I had a chance to rethink what I really needed. It wasn’t much. Just to connect with people having my same condition and find out what treatments worked for them. That shouldn’t be too tall an order in today’s hyper-connected world.

I finally discovered the name of my condition in 2011 after two major research papers were published and gained mainstream media attention. I soon joined and became a leader of an online community of fellow sufferers. With the support of my comrades in arms, I began to find relief with self-administered immunotherapy. Now having some extra energy, I used my background in software development to build a web app that would allow ePatients with any condition to connect, share solutions, and feel comfortable being their real selves. I wanted to realize my dream of a future where no one - regardless of how rare or personal his or her condition - would suffer alone. A future where treatment ratings and reviews were as freely accessible for medical treatments as they are for restaurants and books. The web app is called FeelAlike, and I think it’s a decent start.

I’m very excited to be attending MedX to learn more about ePatient advocacy and how to empower ePatients.

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