TWO OF ME: LIVING WITH PORPHYRIA
A story of human strength, perseverance and survival, chronicling the lives of seven people around the world living with AHP.
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HEAR FROM THE acute hepatic porphyria (AHP) COMMUNITY
Voices of AHP is a platform filled with real stories from real people about AHP. These stories may help empower those who have been diagnosed and encourage those who may be undiagnosed to recognize and understand the symptoms of AHP.
TWO OF ME: LIVING WITH PORPHYRIA
A story of human strength, perseverance and survival, chronicling the lives of seven people around the world living with AHP.
A story of human strength, perseverance and survival, chronicling the lives of seven people around the world living with acute hepatic porphyria (AHP), a debilitating, rare genetic disease characterized by excruciating attacks and, for some, chronic symptoms. The film is directed by Emmy-nominated filmmaker Cynthia Lowen and sponsored by Alnylam Pharmaceuticals.
People living with AHP can often wait up to 15 years to receive an accurate diagnosis. Help close this gap by telling 15 people about the film to raise awareness of AHP.
9:20
NICOLE’S LONG ROAD TO DIAGNOSIS
Nicole talks about her long journey to an AHP diagnosis, alongside Dr. Angelika Erwin, a porphyria expert, who provides an overview of the disease, including symptoms and ways to test for AHP.
4:56
MEGAN'S UNPREDICTABLE REALITY
Megan, along with her mother and husband, discuss her struggles with the unpredictable nature of AHP.
3:37
Nathan's long road with Hereditary Coproporphyria (HCP)
Nathan discusses how hereditary coproporphyria (HCP) impacted his life since the age of 7 years old.
3:11
ANIA’S FAMILY INHERITANCE
Ania discusses how acute intermittent porphyria (AIP) has affected 3 generations of women in her family with severe attacks and agonizing pain.
2:20
GLAUCIENE’S LIFE BEYOND ACUTE INTERMITTENT PORPHYRIA (AIP)
Glauciene shares how she won’t let acute intermittent porphyria (AIP) stop her from accomplishing her dreams.
2:20
REGINA OVERCOMES HER VARIEGATE PORPHYRIA (VP)
Regina’s battle with variegate porphyria (VP) kept her from running. Now, she’s back to running life on her terms.