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What's UP Doc? Is a monthly column where we feature a patient question along with a response from a member of the UPA Scientific Advisory Board.
Do you have a question you would like to ask a Porphyria Expert? Send us an email at info@porphyria.org. We’d love to hear from you!
To respond to this question, we turned to Dr. Herbert Bonkovsky (Atrium Wake Forest Baptist Health, Winston-Salem, NC), who was the physician that first used Panhematin in a patient with Acute Intermittent Porphyria. UPA was able to record Dr. Bonkovsky’s recollection of the patient and the experience. Enjoy this video response!
To read more about Dr. Bonkovsky click here.
"With rare diseases, you could call every patient a clinical trial of one because each one is unique. It is important to listen to them and try to address their symptoms."
