Eryn was in the prime of her life when porphyria turned it upside down. Walking with her daughters one day, she suddenly felt ill. She went to a nearby emergency room, but was released with no diagnosis. Sadly, within a few weeks Eryn was ill again. Because her unique symptoms worsened quickly and she still had no medical answers, doctors did not hesitant to tell her the disease was in her “head.” They were wrong.
Eryn was debilitated with nausea, inability to walk, seizures, and psychiatric issues without explanation. The symptoms grew, as did her outlook on life. She endured 60-plus trips to the ER and even more doctor visits. Finally, she decided to go to one last appointment with a new dermatologist, who changed her life.
Upon examination, the doctor noticed one tiny, but recognizable bump on her little toe. He told Eryn it was a “shot in the dark,” but could reveal an answer. He ran acute porphyria screening tests and was aghast when the results were positive! Early in her disease awareness, she remembers being wheeled into the hospital. “I was on the phone with Desiree at the APF, who was calming me, educating me, encouraging me, praying for me, telling me I was not alone.
I clung to that hope!” With the APF as a resource and with doctors who cared about her, she began taking Panhematin. She then discussed Givlaari with her doctors and together they decided to try it. It took over a year for her to level off, but Eryn is now doing well using both treatments as needed.
Eryn says, “Panhematin saved my life and Givlaari keeps my life going better!” Eryn’s Road to an Acute Porphyria Diagnosis Erin fought for her AHP diagnosis, Eryn is now doing well using both treatments as needed. Eryn says, “Panhematin saved my life and Givlaari keeps my life going better!”