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: https://www.hhs.gov/sites/default/files/pmtf-final-report-2019-05-23.pdf.
Do you want to share your pain story? Email firstname.lastname@example.org