• Thursday, March 21, 2019

Do you experience pain due to Acute Porphyria? Please take 5 minutes to submit a comment TODAY to help the federal government develop official guidelines.

A government task force is addressing how to manage pain in the face of the opioid crisis. Their recommendations will become the guidelines for all government agencies.

The American Porphyria Foundation has been very involved in this committee.

Now it is your turn to make public comment. It doesn’t need to be long or perfect. Time is of the essence.

Your comment should include:
- Your diagnosis

Sample: I was diagnosed with Acute Intermittent Porphyria fifteen years ago at the age of twenty-six.

- Description of your pain
Sample: “worst pain in humankind,” “torture,” “feels like a thousand flaming swords,” “inhumane,” “feels like coals burning in my abdomen,” etc.

- Unsafe drugs trigger an Acute Porphyria attack
Sample: Acute Intermittent Porphyria is a pharmacogenetic disease. If I take an unsafe drug, it will cause an attack which includes extreme pain.

- That opioids are the ONLY safe drug that helps to manage the severe pain of acute porphyria.
Sample: My physician has prescribed and managed safe opioid use for my disease for 10 years.

- Any personal details you would like to share
Sample: I have been called a drug-seeker for requesting opioid pain management even with a diagnosis. I have been sent away from emergency rooms and hospitals.

Submit comments HERE.