Porphyria Support Groups

A diagnosis for yourself or a loved one of a rare disease such as porphyria can make you feel isolated, overwhelmed, and even depressed. When a disease is so rare, it can feel like you are the only one who knows what you are going through. However, there are multiple support groups that you can turn to that can provide help to you and your family.

What is porphyria?

Porphyria is not one but a group of eight related genetic disorders. The accumulation of porphyrins or their precursors — molecules that are used to build porphyrins — in the body is the cause of all porphyrias.

Defects in one of eight enzymes that convert porphyrins and their precursors into the compound heme are responsible for this accumulation. Heme is important for the formation of hemoglobin, the protein that carries oxygen in red blood cells.

Depending on which enzyme is defective, the symptoms can range from abdominal and body pain to neurological symptoms — such as weakness, confusion, and psychosis — to skin sensitivity to abrasion and sun exposure.

How can a support group help me?

Whether you have porphyria yourself or have a loved one who does, a support group can help you connect with others in a similar situation. Through these connections, you can share stories with others who can relate to your experiences, and share advice. Support groups also can help reduce feelings of isolation and depression, and help members learn skills to cope with challenges and stress related to the disease.

They also can be great places to share information about scientific discoveries and treatments related to porphyria.

How can I find porphyria support groups?

A variety of organizations, including large nonprofit patient advocacy groups, hospitals, clinics, and small local community groups, can offer support. To find more information about support groups, you can check with your physician, clinic, or hospital. You also can search for large organizations related to porphyria in your country.

Finally, there are websites written for and by people with porphyria — such as our website Porphyria News — which contain information about new research and treatments. Porphyria News also features a column written by Claire Richmond, “One Thousand Flaming Swords,” which chronicles her challenges living with the disorder.

Here is a list of organizations that can aid you in your search for support groups:

• American Porphyria Foundation
• British Porphyria Association
• European Porphyria Network
• Porphyria Association Inc. Australia

Last updated: Sept. 8, 2020