Skip to main content

Attitude and Healing- My Perspective

Having a positive attitude has helped me get through my treatment, both when I'm in the Hospital, Infusion Center and at home.  It helps me feel better and hopefully those who I come in contact with.

A friendly smile or kind word spoken can really unite us together and reminds us we are not alone.  We fight this disease together, and together we can overcome adversity. 

Just as there is no denying we have our dark days of Porphyria, and what it has brought me, there are many gratifying days filled with support, and hopefulness.  
These help me carry through.

Recognize and appreciate the bright days and draw strength from sharing your own experiences with others.  
Attitude and outlook are helpful weapons in living with this disease and, as you know, you need every tool available, why because its R.A.R.E.....

So, In addition to your Doctor, APF suggestions, and treatments you must ENDURE, try building a positive attitude into your regimen.  The smile you display and the one you'll receive back is infectious.

Your approach to treatment and getting your positive drive to get better will help everyone!


Popular posts from this blog


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…


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…

Happy Winter Season!

                  Happy Winter Season!