Living with Acute Porphyria can be difficult. This article provides interviews from the BPA and provides clarity as to how individuals from day to day can live with AHP. https://ojrd.biomedcentral.com/.../s13023-021-01816-2.pdf
Medical Moment- Coronavirus Statement from the Porphyrias Consortium and the APF
The American Porphyria Foundation and the physicians of the Porphyrias Consortium (PC) encourage our members and patients to follow the guidelines recommended by the Centers for Disease Control and Prevention (CDC) regarding Coronavirus, which causes COVID-19. Here are guidelines from the CDC and the PC to follow in order to prevent the spread of COVID-19:
Porphyria patients should still be attending their regular scheduled medical appointments unless your physician indicates otherwise. If you have any concerns, please contact your healthcare provider.
Patients who are receiving regular prophylaxis against acute porphyria attacks, such as weekly or semi-weekly infusions of heme or monthly injections of Givosiran, should continue to receive these.
Contact your healthcare professional or porphyria specialist with any concerns regarding travel.
In general, patients with porphyrias, unless they also have heart, lung, kidney, or liver disease and/or are receiving immunosuppressive therapy or chemotherapy for non-porphyric diseases, are NOT at increased risk for contracting Covid-19 infection, nor at increased risk for adverse outcomes if they do.
Stock up on supplies:
Speak to your medical team about stocking up on necessary medications.
Buy essential household items and groceries so that you are prepared to stay home if there is an outbreak.
Take everyday precautions:
Avoid close contact with people who are sick.
Avoid touching your eyes, nose, and mouth.
Stay home when you are sick:
Cover your cough or sneeze with a tissue, then throw the tissue in the trash.
Clean and disinfect frequently touched objects and surfaces using a regular household cleaning spray or wipe.
CDC does not recommend that people who are well wear a face mask for protection. Face masks should be used by people who show symptoms of COVID-19 to help prevent the spread of the disease. The use of face masks is crucial for health workers and people who are taking care of someone in close settings.
Wash your hands often with soap and water for at least 20 seconds, especially after going to the bathroom; before eating; and after blowing your nose, coughing, or sneezing. - If soap and water are not readily available, use an alcohol-based hand sanitizer with at least 60% alcohol.
Avoid crowds as much as possible:
Try to avoid any area or events with a large number of people, especially areas that are not well ventilated.
If you feel sick or have any symptoms – stay home:
Symptoms include fever, cough, sore throat, body aches, headache, chills. If you feel like you are developing symptoms, call your doctor.
We encourage you to follow the advice of your medical team regarding your personal health and safety and stay informed by following updates from the CDC and your local health department. Currently the risk for getting COVID-19 remains low in the United States, however, we recognize that may change quickly.
Get the latest updates from trusted resources: