Archive for January, 2012

Should I go to a conference about my disease?


Joyce speaks with two people who attended the VHL Conference in Houston in June 2011: Michelle from Texas and Sue from Tennessee. For Michelle, it was her first such meeting. In addition to the expense and time commitment of going to a conference about your disease, there are always emotional barriers to cross — Will it be a downer? Will I be upset? Will the people I meet be so sick I will be terrified? Will I understand what is being said? Both Michelle and Sue found it very empowering to attend the meeting, meet others on the same journey, and learn strategies for managing their health.

Filmmaker talks about life with a rare disease


Tarek McCarthy developed his love and fascination for film at a very early age through acting and modeling. As an adult he stepped behind the camera, and was soon off to a successful career in directing and producing documentary films dealing with humanitarian and environmental issues. McCarthy talks with Joyce about his experiences living with a rare disease, and how it has shaped his character.