Self-management

Lifestyle and home remedies

If you have porphyria:

  • Learn what could trigger symptoms. Talk to your doctor about the type of porphyria you have and become familiar with possible symptom triggers and ways to avoid them.
  • Inform your health care providers. Tell all your health care providers that you have porphyria. This is particularly important because sometimes treatments, medications or surgery can trigger porphyria symptoms.
  • Wear a medical alert bracelet or necklace. Have information about your condition inscribed on a medical alert bracelet or necklace, and always wear it.

Coping and support

Porphyria is considered a chronic illness, as the underlying cause can't be cured. However, porphyria usually can be managed by treatment and lifestyle changes so that you can live a full and healthy life.

Prevention

Although there's no way to prevent porphyria, if you have the disease, avoid triggers to help prevent symptoms.

Because porphyria is usually an inherited disorder, your siblings and other family members may want to consider genetic testing to determine if they have the disease, and get genetic counseling if needed.