Skip to main content

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 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!"


Popular posts from this blog


What could it be?
Nerve Pain WHAT IS NEUROPATHIC PAIN? Neuropathic or nerve pain (NP) is a long-term or chronic pain disease that results from nerve damage. It can be caused by different diseases or conditions. Worldwide nerve pain affects as many as 26 million people. Neuropathic or nerve pain may affect larger areas of the body or it can be restricted to a smaller area, in this case it is called localized neuropathic pain (LNP). WHAT CAUSES NEUROPATHIC PAIN? Neuropathic or nerve pain may occur in the absence of an obvious visible cause (e.g. an accident, an injury, a chemical burn). There are several external situations that can directly damage nerves and lead to neuropathic pain, such as: Amputation of a limb (phantom pain, stump pain)Surgery (scar pain, post-surgery pain)Trauma or accident Neuropathic pain is also a common complication of other diseases, including nerve damage after shingles or herpes zoster infection (postherpetic neuralgia or PHN), nerve damage after HIV infectio…


GLOBAL PORPHYRIA ALLIANCE The APF is proud to support our members that live across the globe. Many countries around the world have developed organizations to support their local communities. We hope that enjoy the same opportunity to communicate with one another, develop friendships, and learn about porphyria. Here are links to patient advocacy groups worldwide that offer support to individuals impacted by porphyria. Argentina: Centro de investigaciones sobre porfirinas y porfirias | More informationAustralia: Porphyria Association, Inc. | More informationBrazil: Associação Brasileira de Porfiria | More informationCanada: Canadian Association for Porphyria | More informationColombia: Fundación Colombiana Para La Porfiria | More informationDenmark: (Porphyria Association Denmark)Denmark: (Danish Porphyria Support Group)England: British Porphyria AssociationFinland: Finnish Porphyria Support Group France: Association Française des Malades Atteints de Por…

Happy Winter Season!

                  Happy Winter Season!