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
We are excited to announce that we will launch our newly
updated APF website TOMORROW. It is optimized to offer the patient
community and healthcare professionals easy access to critical content -
written by renowned experts - on all of the porphyrias.
On Thursday, November
1, 2018 you will be able
to access the new website from any browser and on any device at
Thank you to our members, industry partners, and our
brilliant physicians for making this update possible!
Mobile view of the New APF Homepage!
CALENDAR UPDATE: We are a week
into voting and have seen an outstanding response! There is still a week
left so remember to vote for your favorite pet picture and show your
support of the APF. You can visit the APF website and see all of our
amazing entries to pick who you want to see on the cover of the 2019 APF
Pet Calendar! All photos will be included in the calendar though. Happy
23rd - November 8th
Calendars ready for sale and shipping on November 25th!
Starting your holiday shopping? Many of you purchase
numerous items from Amazon. Did you know that your you can support the APF
through the AmazonSmile
program! Amazon donates 0.5% of the price of your eligible AmazonSmile
purchases to the charitable organization of your choice.
Please make the APF your choice of a charitable donation.
Support porphyria while shopping!
Note, this program to provide donations to the APF will ONLY
be available to shoppers who visit Amazon via a special web address,
instead of the normal www.amazon.com
It is easy and free! AmazonSmile is the
same Amazon you know - same products, same prices, same service.
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…