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
Hurricane Florence is projected to be a strong Category
4 storm by the time it hits landfall sometime Thursday evening.
In preparation for the hurricane, please make sure that
you are stocked up on non- perishable food items and bottled water.
To our members and doctors in the projected path, please
stay safe and follow emergency management personnel orders.
Panhematin Study - Participants Needed!
Do you have AIP, VP or HCP? Are you interested in
participating in research? If so, we are recruiting volunteers for the
Our researchers need people to volunteer for the
Panhematin study. Completing this study will help prevent insurance companies
from not paying for this treatment.
The purpose of this study is to determine if Panhematin
is safe and effective for prevention of acute attacks of porphyria.
Please contact Edrin at the APF office (301.347.7166) if
you are interested in participating.
Harvoni Study - PCT
Do you have PCT? Are you interested in
participating in research? Do you have Hepatitis C? If you
answered YES to these questions, this is for you.
We need YOU for a clinical trial!
The purpose of this clinical trial is to assess whether
Harvoni alone is an effective therapy in active PCT patients with Chronic
Who can participate?
patients with PCT who also have Hepatitis C
If you are interested in participating please contact
Edrin Williams, Director of Patient Services at the APF office at
301.347.7166 for additional information.
Safe/Unsafe Drug Questionnaire for the Acute
Porphyrias (AIP,VP,HCP & ADP - VERY IMPORTANT
The APF is collaborating with researchers to identify
new safe and unsafe drugs. We need your help. Are you experiencing adverse
effects with any of your new medications? If so, please let us know in the
questionnaire below how it affected you. We will share these results with
our team of renowned Porphyria experts/researchers. They are in the process
of updating our safe and unsafe drug list for the acute porphyrias. Your
donations will help us educate physicians about the dangerous effects of
unsafe drugs. Please click on the link below for the Questionnaire.
Are you ready to be a medical hero? A new clinical
trial with an oral investigational drug intended to reduce phototoxicity
in people living with EPP has begun. Don’t delay – contact the APF to
learn more at 1-866-APF-3635 or firstname.lastname@example.org
"Remember...Research is the key to YOUR
Each Step Toward Finding an Effective Treatment is
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…