How Remicade Infusion Pow-Wows Are Empowering Patients

Sean Ahrens is one of Health 2.0’s fastest rising stars. At the age of 12, he was diagnosed with Crohn’s Disease, an incurable, inflammatory disease of the digestive tract. After having several devastating flare-ups, he went on a quest to do anything he could to treat the disease by experimenting with numerous alternative therapies and diets (including intentionally infecting himself with parasitic worms). Most recently, Sean founded the popular e-patient resource, The Crohnology Blog and (now in Beta) Crohnology which was plugged into the RockHealth incubator just this year. Of the many wonderful entries on The Crohnology Blog, we decided to feature this piece because it demonstrates how valuable patient insight could transform treatment design.  — Deb Linton

Crohn’s and Colitis are isolating conditions. Because they are invisible illnesses, it’s impossible for a patient to walk down the street and identify another. As a result, we patients are disconnected from each other by default. To be connected to other patients, it takes conscious effort.

Friendships in real life are created by people being put into situations that allow them ample time to get to know others socially — for example, you meet someone at work, at school, or at a party.

Patients with Crohn’s & Colitis don’t have a natural setting for this sort of socialization. As a result, becoming close friends with other patients has to be a result of a created situation. It requires looking for others online or it requires setting up getting coffee with that cousin of your parent’s friend’s friend who you were told through the grapevine has Colitis. The truth is most patients don’t do it. It’s too much work, the odds that you will really connect with that person are too low, and the benefit is too amorphous.

What I’m saying is that Remicade, an intravenous medication for IBD, changes all of this. It takes disconnected and isolated patients and builds connection and empowerment among them. How could a medication for Crohn’s & Colitis do this?

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