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Showing posts from June, 2014

Listen with Your Heart- Part One

When someone close to you who has Porphyria starts to talk about the disease, do you change the subject? Do you stand in silence, worried that you'll say the wrong thing?  Say nothing at all and walk away? Are you tired about hearing about the problems?  If so, you share these feelings with many others.

How do you talk to someone who has Porphyria?

When talking with someone who has Porphyria, it is important to listen.  Try to hear and understand what the person is saying about he or she feels.  Don't make light of what he or she is saying or try to change the way they are feeling or acting.  Put your feelings and fears aside.  Let the person know that you are open to talking whenever they feel like talking.  Or if the person doesn't feel like talking that's OK, too.

In these series I wanted to share some helpful ideas on how to be supportive and helpful when you talk to someone who has Porphyria.  You can learn how to make the person with Porphyria know that they have so…

10 Things to Remember When You Feel Lost and Alone- Leave your thoughts and comments

10 Things to Remember When You Feel Lost and Alone
―Charles Bukowski “This morning I felt lost and alone as I was driving home after a brutal breakup with my boyfriend.  I turned on the radio and the Michael Jackson song ‘You Are Not Alone’ was playing.  A few seconds later, at the exact moment the chorus began, I passed a huge billboard sign with big black letters that read, ‘YOU ARE NOT ALONE!’” That’s the opening paragraph of an email I received today from a reader named Ella.  It made me smile because I love when life delivers seemingly coincidental, positive messages like that, right when we need them most. However, the rest of Ella’s email further described her ongoing struggle with feeling “lost and alone” in life.  Which got me thinking… Why do people have to feel this way?  What’s the point of it all?  Millions of people in this world, all of them craving connection, and looking for specific experiences and people to satisfy them, yet inadvertently isolating themselves in the…

Oliver's Medical Journey with CEP

Oliver's Medical Journey Raised: $8,355.00 Goal: $10,000.00 Created by Nichole Zimmardo 476 Friends ContactEmbed

"Longitudinal Study for All Porphyrias"

"Longitudinal Study for All Porphyrias" The 6 Porphyria Consortium sites:    §Dr. Robert Desnick, Mount Sinai School of Medicine, New York City, NY §Dr. Herbert Bonkovsky, Carolinas Medical Center, Charlotte, NC §Dr. Karl Anderson, University of Texas Medical Branch, Galveston, TX §Dr. Joseph Bloomer, University of Alabama, Birmingham, AL §Dr. John Phillips, University of Utah School of Medicine, Salt Lake City, UT §Dr. Montgomery Bissell, University of California, San Francisco, CA are conducting a 5 year study on all of the porphyrias sponsored by a grant from the Rare Diseases Clinical Research Network (RDCRN) of the National Institutes of Health (NIH).  §PURPOSE:  To learn more about the course of the disease by understanding its                                  natural history, symptoms and medical treatment. §PARTICIPATION CRITERIA:  You must have a diagnosed case of porphyria. §INVOLVEMENT:  o1st Phase - Enrollment - This requires a site visit where your information -  history an…

Pick Your Brain Why do I feel this Way?

10 All Natural Ways to Stop Feeling DepressedLife is a drag.What’s the point of anything?I’ll never be happy. Do any of these gloomy thoughts sound familiar? It’s likely they do. The occasional case of the blues is perfectly normal, but that doesn’t make dealing with it any easier. If you allow them to, negative thoughts can fester and lead to serious depression. That’s why it’s important to take action early to bust yourself out of a slump. While these suggestions won’t eliminate your problems, they can help you break a negative thought pattern and stop feeling depressed. If you think you might have a serious mental health problem, don’t hesitate to see a medical professional. 1. Understand the emotional cycle – Life is an emotional roller coaster. Some days you feel like nothing can stop you. Other days you feel utterly hopeless. Most of the time you’re somewhere in between. Understanding the pattern of positive and negative emotions will help you put your feelings in perspective. N…

You shop. Amazon Gives. Your shopping supports the American Porphyria Foundation

Amazon will donate 0.5% of the price of your eligible AmazonSmile purchases to American Porphyria Foundation whenever you shop on AmazonSmile.AmazonSmile is the same Amazon you know. Same products, same prices, same service.Support your charitable organization by starting your shopping Questions? Learn more about AmazonSmileNot interested? Shop Amazon.comRepresent a charitable organization? Visit
"Remember....Research is the key to your cure!"

Your shopping will support American Porphyria Foundation Select a different charity

Read more about the importance of testing for porphyria on our website:

Read more about the importance of testing for porphyria on our website
Let the APF know if you would like an educational packet to be sent to your doctor or/and you would like to receive a patient packet.
Testing for Porphyria | American Porphyria Foundation The porphyrias are readily diagnosed by laboratory testing, especially at or near the time of symptoms. PORPHYRIAFOUNDATION.COM
"Remember....Research is the key to your cure!"

Are YOU Interested In Research On Rare Diseases? Event Day June 12 & 13

Hi all APF members family & friends.  If you have not signed up for the RDCRN~ contact registry or need assistance, I will be contacting you over the next two days this week Thursday and Friday- June 12 & 13 from the hours of 2-9pm Eastern time zone. Please schedule a 10-15 minute phone call and have your date of diagnosis or approximate date with you.  If you are unsure about what this registry is please feel free to look below and if you want to enroll yourself please feel free to do so at this link.  You can also email me your name & number to or call the APF office @ 866-APF-3635.  We really need volunteers as projects are currently running and future research projects start.  Will you show your support for research?  Please reach out!  It’s a wonderful opportunity that you will not want to miss out on.
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