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
Do you have AIP, VP or HCP? Are you interested in participating in research? If so, we are recruiting volunteers for the Panhematin Study.
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.
EPP on Fox News - Thursday, August 2nd at 10pm!
Camp Sundown 2018 was extra special for our porphyria community - the first week was dedicated to children with EPP. Fox News caught wind of this special event and came to see what camp and living with photosensitivity is all about. Tune in tomorrow night - August 2nd - at 10pm to see the segment. The APF will have access after it airs and we will be sure to share with all of you.
Hearing Hoofbeats, Thinking Zebras
Click on the link below to view a story by our patient member Eryn Sallee. Thank you, Eryn, for sharing your story!
Please contact the APF on 866-APF-3635 to request information on these new clinical trials. There are seven study sites across the US that need your participation. Do you want a new treatment for EPP? – then come be part of the solution.
Remember…Research is the Key to Your Cure!! Every step along the way is important.
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 Hepatitis C.
Who can participate?
·Adult 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.
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…