Making a health care team

What's UP Doc?

Mar 25

Porphyria is a complex condition and it's hard for patients to put together a "team" of doctors to collaborate on our care, especially when we may not know the systems of our body to regularly monitor and evaluate. Can you recommend a list of specialties for acute porphyria patients, and a list of specialties for cutaneous porphyria patients?

This week Dr. Bruce Wang helps patients as they try to assemble their “team” of doctors. To see Dr. Wang's suggested “team” of doctors for each porphyria click here.

Thank you to Dr. Wang for this What's UP Doc? answer! Do you have a question for a porphyria expert? Send it to info@porphyria.org.

Check out related What’s UP Doc? Responses

Porphyria Spotlight

Urine Porphyrins for Diagnosis

Question: I think I might have Acute Intermittent Porphyria (AIP). My doctor ordered a urine porphyrin test, my porphyrins were high but then I was told that the results aren't considered diagnostic. Why not? And what tests should my doctor order?

Porphyria and Menopause

Question: How will menopause affect my porphyria? Are estrogen treatments for menopause safe?

Surgery precautions and cutaneous porphyrias

Question: I am having a planned laparoscopic surgery next week. Should there be a filter on the light on the laparoscope? If so, would you be able to tell me what filter would need to be used? Can you also tell me what filters would be needed for the surgery lights in the operating room?

Acute porphyria and liver tests

Question: If you have acute porphyria, why is it important to have your liver function checked annually? What can you do to prevent issues with your liver?

AIPHCPVPPCTXLPCEPEPPWang

Dr. Bruce Wang

Making a health care team

Check out related What’s UP Doc? Responses

We are here for you.

Get Involved

Making a health care team

Check out related What’s UP Doc? Responses

Enzymes and porphyria

CEP and dental care

We are here for you.

Get Involved