CAMBRIDGE, Mass.– Alnylam Pharmaceuticals, Inc. (Nasdaq: ALNY), the leading RNAi therapeutics company, today on Rare Disease Day announced the premiere of its new documentary, Two of Me: Living with Porphyria, a film chronicling the lives of seven people around the world living with acute hepatic porphyria (AHP), a family of debilitating, rare genetic diseases. Directed by Emmy-nominated filmmaker Cynthia Lowen, Two of Me: Living with Porphyria is a story of human strength, perseverance and survival that calls on others to spread the word about this rare disease, now available on www.PinpointAHP.com.
“Living with AHP can sometimes feel like there are two of me – my energetic and bubbly self, and the shadow of myself I become when I experience AHP attacks and symptoms; the pain is all consuming,” said Ania Kalinowska, narrator of Two of Me: Living with Porphyria who is living with AHP. “By sharing my story with the world, it is my hope that others suffering with AHP symptoms or who are struggling to find a diagnosis feel inspired to continue advocating for themselves and, most importantly, know that they are not alone.”
AHP is characterized by excruciating, potentially life-threatening attacks and, for some patients, chronic symptoms that negatively impact daily functioning and quality of life. While severe, unexplained abdominal pain is the most common symptom of AHP, the disease can manifest in different ways from person to person. Other symptoms of AHP can include nausea, fatigue, anxiety, depression, and pain in the limbs, back or chest, which can occur between attacks. Because AHP is rare and its symptoms resemble those of more common conditions, misdiagnosis is common, and can result in unnecessary treatments, surgeries or procedures. In fact, people suffering can wait up to 15 years to receive an accurate AHP diagnosis. Two of Me: Living with Porphyria aims to raise awareness of AHP and the barriers that exist to receiving a timely and accurate diagnosis by encouraging viewers to “Tell 15” others about the film as part of a global call to action.
“In addition to the devastating physical toll of AHP, it has profound psychological consequences that can affect every part of a person’s life – from relationships to careers to dreams and aspirations. Those who remain undiagnosed may be accused of exaggerating their pain levels or of drug-seeking behavior, or even be told their symptoms are just in their heads,” said Sue Burrell, President, Global Porphyria Advocacy Coalition who is living with AHP. “No one should have to endure what many with AHP experience while searching for answers. I encourage everyone to watch this film and share it widely so we can raise awareness of this disease and shorten the time it can take to obtain an accurate AHP diagnosis.”
“We at Alnylam are so inspired by these individuals’ stories and join them in their unwavering determination to create a better world for the next generation of people living with AHP,” said Tiffany Patrick, Head of Global Patient Advocacy and Engagement at Alnylam. “We extend our deepest gratitude to those who participated in Two of Me: Living with Porphyria for sharing their stories in such an intimate and profoundly human way.”
