Living with CPT2

I am one of the very few people to have been diagnosed with a genetic disorder called Carnitine palmitoyltransferase II Deficiency, or "CPT2 Deficiency". In between episodes, life with CPT2 is very normal. However, during an episode CPT2 patients experience muscle pain, rhabdomyolysis, myoglobinuria and other unpleasant symptoms. I will use this blog to periodically describe my experiences with CPT2 in the hopes that others with the disorder will find it useful.

Friday, January 23, 2015

CPT2 in the news

Somebody on the CPT2 Google Group just posted a link to a story about a hockey player who has CPT2.  There isn't much press coverage of CPT2, so I'm going to start collecting links to press coverage here.  I'll update this page as I find new links.

http://www.collegehockeynews.com/news/2015/01/22_fighting_back.php

https://www.washingtonjewishweek.com/you-should-know-allison-isaacson/?fbclid=IwAR3rjccJNS-1FroRTjZq6egZxGaHGBbKmM4poL8L3-H5XI0l-l82rUXkPzU

https://www.firstpost.com/health/a-new-netflix-series-reveals-the-mysteries-behind-a-good-diagnosis-episode-1-focuses-on-a-rare-fat-metabolism-disorder-7247851.html
Posted by Gary Shuster at 3:03 PM No comments:
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