Skip to main content

Medical Moment: Pain Awareness Month

Medical Moment: Pain Awareness Month

The U.S. Pain Foundation has designated September as Pain Awareness Month. The APF will be sharing pain stories, featured articles, and information related to pain in the porphyrias, whether it is the neurovisceral pain of the acute porphyrias or the burning pain of the cutaneous porphyrias. In fact, two APF members will be featured on the US Pain Foundation website as their videos were selected among the top 30 nationwide (thank you Candace Johnson and Claire Richmond!)

Take a moment to read the attached article: “Patient Perspectives on Acute Intermittent Porphyria with Frequent Attacks: A Disease with Intermittent and Chronic Manifestations.” According to this study, “Pain was usually the first symptom cited by patients with AIP when asked to define porphyria or describe their experience of the disease. It was the most common and distressing symptom experienced by patients, both during attacks and chronically.”

Also of interest, The Department of Health and Human Services organized a task force including multiple agencies to develop guidelines for patients and physicians. The APF made public comment and many patients shared their pain stories with this committee. 
The Pain Management Best Practices Inter-Agency Task Force final report can be found here:
Do you want to share your pain story? Email
#LetsTalkAboutPain #AmericanPorphyriaFoundation


Popular posts from this blog

Amazing patient advocacy....and needed media for this issue. Thank you Terri Witter!

Meet Shadow Jumper Mitchell Felts

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

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…