Raising Awareness, Cutting Diagnosis Time Is Goal of New Alnylam Film

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by Mary Chapman |

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Raising awareness about acute hepatic porphyria (AHP) and helping to shorten the time it takes to get diagnosed with the rare disease are the goals of a new documentary by Alnylam Pharmaceuticals.

The film, “Two of Me: Living with Porphyria,” chronicles the lives of seven people from different parts of the world who all have AHP, one of a group of rare genetic diseases that cause toxic porphyrins to build up in the liver. This results in painful and potentially life-threatening attacks and, for some, chronic symptoms that affect their quality of life.

The documentary, which was directed by Emmy-nominated filmmaker Cynthia Lowen, seeks to inspire people to spread the word about AHP by drawing on examples of human strength, perseverance, and survival.

AHP’s most common symptom is severe abdominal pain, but other symptoms can include nausea, fatigue, pain in the limbs, back, or chest, as well as anxiety and depression.

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The disorder is often misdiagnosed because it is rare and its symptoms mimic other, more well-known conditions. Such misdiagnoses can lead to unnecessary surgeries, procedures, or treatments.

Because patients can wait up to 15 years for an accurate diagnosis, the documentary encourages viewers to “Tell 15” others about the film.

“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,” Ania Kalinowska, an AHP patient and the narrator of “Two of Me,” said in a press release.

“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,” Kalinowska added.

Sue Burrell, an AHP patient and president of the Global Porphyria Advocacy Coalition, said the disease’s effects are far-reaching, as are the consequences of not being properly diagnosed.

“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,” she said.

“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,” Burrell said.

Tiffany Patrick, head of global patient advocacy and engagement at Alnylam, said the company is inspired by the stories of those featured in the documentary.

“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,” Patrick said.

The documentary can be viewed here. In Europe, the film is available here.