Saturday, November 15, 2008

Trigeminal Neuralgia: LivingWithTN

My buddy Ben Munoz and I started a website called LivingWithTN ( to help patients and family members suffering from Trigeminal Neuralgia (TN) find each other and provide mutual support.

According to Wikipedia, TN is a disorder of the trigeminal nerve that causes episodes of intense pain in the eyes, lips, nose, scalp, forehead, and jaw. About 45,000 people in the U.S. and over 900,000 worldwide suffer Trigeminal Neuralgia. TN is an incredibly painful condition. To get an idea of the magnitude of this pain, check out the video below. It's heartbreaking what TeslaGirlIM goes through but also inspirational that she fights through it and even chooses to publicize the condition so that others can better understand Trigeminal Neuralgia.

The idea around patients and family members supporting each other is Ben's. Two years ago, right before our 2nd year at Kellogg began, Ben suffered an aneurysm due to a condition known as AVM. Somehow he got himself to the hospital and survived hours of emergency surgery. Ben is lucky to be alive, and we are lucky that Ben took this experience and built on it. While in recovery, he had a very hard time finding other AVM patients. He felt isolated but decided to do something about it. He used an Internet service called Ning to start a social network called AVM Survivors. The AVM community found it and a year later, the network is thriving with about 450 members. I've been a member of AVM Survivors since day 1 and I'm in awe of the support, positive thoughts and sense of family found at AVM Survivors and I check in often.

Last month, Ben approached me about extending the AVM Surivors concept into Trigeminal Neuralgia because he had heard about and then researched what a difficult condition it is. LivingWithTN is our attempt at extending the goodwill, support and information flow that AVM Survivors has fostered. Hopefully you can check it out, participate, spread the word and please let us know if there is anything we can do to make it better.
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