Thursday, August 14, 2014

When It Comes to Your Health, Speak Up!



The importance of communicating with your
healthcare team

Living with a Porphyria condition means that you may see your doctor
a lot. You likely have regular checkups to keep track of your health.
There also may be times when you have concerns or questions about
the way you are feeling.
Whatever the reason for seeing your doctor, it is important that you
feel comfortable talking freely with him or her about your condition.

In today’s busy healthcare environment, the time you have with your
doctor may be brief. But it can—and should—still be meaningful.

You may have questions. You deserve answers.

 You also need to be able to express what you’re feeling or thinking about your condition.
It is something you are living with every day.

 Being prepared before you go in to see your doctor can help ensure that you address everything you want
to. And the more information you have about your condition, the better prepared you will be to manage it properly. 

So please take a few minutes to turn to porphyriafoundation.com to learn about each type of Porphyria, What it is, symptoms, diet and lifestyle, testing, medications and daily living.  I encourage you to print copies, write your questions ahead of time, be in charge of the Doctor visit!

For additional information for research projects and help please contact Natalia or Desiree Lyons 1-866-APF-3635


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


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Organizations around the world unite for Porphyria links

The following organizations have websites in English The American Porphyria Foundation has a very extensive website, including a section ...