This blog is dedicated to all the Porphyria patients worldwide.
The American Porphyria Foundation will provide updates and information here, as well as on the main site - http://porphyriafoundation.org
Attention Acute Porphyria members...Your
help is needed!
A global research
company is initiating an online survey to get a deeper understanding
of patients’ experiences living with acute porhyria as well as
understand how well a hypothetical new treatment would meet their
needs. The study can be taken on a laptop or desktop computer and will
take approximately 30 minutes to complete.
be screened to ensure they meet the criteria listed below, and those who
complete the survey will receive a stipend.
1.Are 18 years of age or older
2.Have been diagnosed with Acute Hepatic
Porphyria (specific types include Acute Intermittent Porphyria,
Variegate Porphyria, Hereditary Coproporphyria).
3. Own and are comfortable using a
laptop or a desktop computer
4.Have internet access
Please call the
APF at 866-APF-3635 participate in the survey.
The APF will be
exhibiting at the 2019 ACMG Annual Meeting in Seattle, WAApril
3-5. Are you interested in volunteering at our booth? If so, please
contact Edrin Williams, Director of Patient Services, for additional
information at email@example.com or 301.347.7166.
This is an
incredible opportunity to raise awareness about porphyria to those with
little knowledge about this rare disease.
Attention Shadow Jumpers
Shadow Jumpers, a graphic novel written by Shruti
Shenbagam, Hetanshi Naik, and Dr. Manisha Balwani and illustrated by Tina
Chu, is now available on the APF store for $15.
This book is
designed specifically to educate children with EPP and their families in
a way that everyone will understand and enjoy.
for FIND YOUR SHADOW 2019! Visit the APF Website for
this year's application!
Once again this year, the Shadow Jumpers
program will be selecting one family for an all-expenses paid trip to
Walt Disney World in Orlando, FL. All children ages 5-17 and their
families are eligible to apply. Shadow Jumpers is dedicated to finding
creative ways to help kids and their families to take on a safe
In 2018, the Stuhlsatz family was
selected for Light the Moment 2018, the theme of last year's
trip. Their trip - from beginning to end - was "a once in a
is excited for your submissions to FIND YOUR SHADOW 2019!
*please note: Shadow Jumpers is funded
through donations and charitable contributions separate from the APF.
Patient Education and Support Meeting- Phoenix
Holiday Inn & Suites Phoenix Airport
DATE AND TIME
02/23/19 1:00pm - 02/23/19 3:00pm
3220 S. 48th Street | Phoenix, AZ | Room:
Scottsdale | Family and friends are welcome to attend!
Patient Education and Support Meeting- Ann Arbor
DATE AND TIME
03/16/19 1:00pm - 03/16/19 3:00pm
3600 Plymouth Road | Ann Arbor, MI | Room:
Wolverine A | Family and friends are welcome to attend!
Patient Education and Support Meeting- Seattle
Seattle Public Library- Central
DATE AND TIME
04/04/19 5:30pm - 04/04/19 7:30pm
1000 Fourth Avenue| Seattle, WA | Room:
Washington Mutual | Level: 4 | Family and friends are welcome
Meet Shadow Jumper Mitchell FeltsMitchell Felts, age 12 How old were you when you were diagnosed? I was 9 Years old. Do you remember your first flare/reaction? No, I do not recall my first flare & reaction. What did it feel like to you? It was tingling bad on my skin. What things help you feel better? (cool water, ice, shade, bath, clothes) It helps me when I use cold rags and ice packs on my skin. How long does it take before you start to feel better? Sometimes, I start to feel better after the first day, but sometimes it takes 2-3 days or longer to feel better. What kind of clothing/trends do you wear when you go outside or in bad lighting? I can use long sleeves, hats and umbrellas. What is your most favorite sport to play or watch? Do you play it inside or outside? During the day or at night? I enjoy playing baseball late in the day and it feels great to play at night. What ways are you able to adapt to do certain activities outside? I must cover up, its hot outside so I must take breaks to c…
Medical Moment: Patient/Physician Relationship We all want a great relationship with our doctors, right? You, as the patient have a responsibility to establish a solid rapport with your physician and other members of the healthcare team. This can have a positive impact on the quality of care and better access to treatment. Yes, there could be a stigma associated with having Porphyria but don’t let it stop you from receiving the proper treatment that you deserve. Communication is KEY! Below you will find some key elements and tips that will not only prepare you for your visit with your doctor, but also build a strong relationship.
Here are a few tips for your doctor’s visit:
1. Plan – Be prepared! Prepare your questions and concerns beforehand. You want to be courteous of your physician’s time with you.
2. Make a list – Make a list of your questions, concerns and any other relating information.
3. Communication is key – Make sure that you understand fully what the doctor is explaining/a…