Thursday, May 9, 2013

Read, Think, Learn and Act Quickly


I wanted to take just a few moments to say how thankful I am for the American Porphyria Foundation.  They provide so many things for us.  Even though I have AIP, I see so many of you that have EPP, have gone through the trials and could see a real difference.  Just when you’re not feeling good what do you do to protect yourself?  I hope that you can get the courage to write how you feel about how you have benefited already from your experience; how you need a drug so you can live your life to the full.  Thinking back about how the APF has helped many of you from diagnosis, doctors and treatments, can you pay it forward?

When I have AIP attacks it is one of the most miserable things to endure, when I have the opportunity to do my part in trials, learning, education, writing letters to express how I feel about having a rare disease and how a drug can make me feel better, I speak I write I tell anyone who will listen to me why I need support, approval for research and new medications.  So I encourage each and everyone one of you to support each other, get your families, friends to express how you need an approved treatment here in the United States.  It’s made so much progress all around the world.  Please send your letter ASAP. 
To the: American Porphyria Foundation
4900 Woodway, Suite 780, Houston, TX 77056. Toll free: 1.866.APF.3635.

Remember....Research is the key to your cure!

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