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Showing posts from January, 2019

Porphyria Post

Porphyria Post

Mark Your Calendar! This year's PORPHYRIA AWARENESS WEEK will be April 6-13, 2019. This is a chance for YOU to promote porphyria awareness and education within your community!!!
The APF will be providing tools for you to help you engage your community but we need YOU to participate and spread the word about porphyria. Stay tuned for more updates on this exciting week!
Have ideas for activities? Contact the APF at 866-APF-3635 or porphyrus@porphyriafoundation.comand we would love to support you!

Sandra Ihring VP- Variegate Porphyria

Sandra Ihring VP- Variegate Porphyria
I come from a Central Oregon town with the population of about 1100 people. I moved back here to Central Oregon, where I was raised after 40 years of being away. I took my grandson to a local ER in Redmond, OR (population about 26,000) after an accident where he hurt his foot which needed to be checked out.  I was making small talk with him in the waiting room and told him of some new information about porphyria I had learned.  A woman in the waiting room overheard our conversation.  So, as it goes in small towns; we started talking.  She told me that she had porphyria also. She was called in to see the triage nurse but her husband remained and we visited.  I exchanged contact information with him and we briefly traded stories. She came back in the room shortly. My first question after finding out what kind of porphyria she had (AIP), I asked her how she was diagnosed; as I knew of my own 'war stories' of finally finding the correct diagnosi…

Porphyria Post

Porphyria Post
Member Stories Share your story! We want to hear from you…
In preparation for Porphyria Awareness Week (April 6-13), the American Porphyria Foundation invites you to share your story with the porphyria community. With permission, all stories will be featured on the APF Website. We will also feature select stories in our quarterly newsletter.
Stories should be about 500 – 2000 words and full of your personality. Make sure to include information about your specific porphyria type, your diagnostic journey and how this disease has impacted your life.
We will be sending out a small token of our appreciation to the first 5 submissions.
We look forward to receiving your stories. The APF office hears regular feedback that the stories listed on our site have helped them feel less isolated and work toward diagnosis. Thank you for having a hand in helping others through your stories and words.
Send your stories to Edrin at edrinw@porphyriafoundation.org Volunteers Needed!
The APF will be…