Although there's no way to prevent porphyria, if you have the disease, these steps may help prevent symptoms:
- Avoid medications known to trigger acute attacks. Ask your doctor for a list of safe and unsafe drugs.
- Don't use alcohol or illegal drugs.
- Avoid fasting and dieting that involves severe calorie restriction.
- Don't smoke.
- Minimize sun exposure. When you're outdoors, wear protective clothing and use a broad-spectrum sunscreen with a high sun protection factor (SPF).
- Treat infections and other illnesses promptly.
- Take steps to reduce emotional stress.
Because porphyria is an inherited disorder, your siblings and other family members may want to consider genetic testing to determine if they have the disease.
May 20, 2014
- Information for professionals. The Porphyrias Consortium. https://rarediseasesnetwork.epi.usf.edu/porphyrias/professionals/index.htm. Accessed Feb. 7, 2014.
- Learning about porphyria. National Human Genome Research Institute. https://www.genome.gov/19016728. Accessed Feb. 7, 2014.
- Porphyria. National Digestive Diseases Information Clearinghouse (NDDIC). http://digestive.niddk.nih.gov/ddiseases/pubs/porphyria/. Accessed Feb. 7, 2014.
- Anderson KE. Porphyrias: An overview. http://www.uptodate.com/home. Accessed Feb. 7, 2014.
- Overview of porphyrias. The Merck Manuals: The Merck Manual for Health Care Professionals. http://www.merckmanuals.com/professional/endocrine_and_metabolic_disorders/porphyrias/overview_of_porphyrias.html. Accessed Feb. 7, 2014.
- Porphyria. Genetics Home Reference. http://ghr.nlm.nih.gov/condition/porphyria. Accessed Feb. 7, 2014.
- Riggin, EA. Decision Support System. Mayo Clinic, Rochester, Minn. Nov. 21, 2013.
- Panhematin hemin for injection (prescribing information). Lebanon, N.J.: Recordati Rare Diseases, Inc.; 2013. http://www.aiporphyria.com/. Accessed Feb. 12, 2014.
- Porphyrin tests. Lab Tests Online. http://labtestsonline.org/understanding/analytes/porphyrins/tab/sample. Accessed Feb. 17, 2014.
- Tracy JA, et al. Porphyria and its neurologic manifestations. Handbook of Clinical Neurology. 2014;120:839.
- Pittelkow MR (expert opinion). Mayo Clinic, Scottsdale, Ariz. March 17, 2014.
- Solberg LA Jr. (expert opinion). Mayo Clinic, Jacksonville, Fla. March 18, 2014.
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