Alliance for Cryoglobulinemia Releases Videos for Awareness


Be Rare! A Cryoglobulinemia Public Service Announcement

This video, featuring Dr. Monarch of Boston Unviersity & Vasculitis Clinical Research Consortium, uses footage of people living with cryoglobulinemia. It shows the strength, beauty and difference of people with cryoglobulinemia. Produced by Matt Hanlon (www.thoughtfulduck.com), sponsored by www.allianceforcryo.org & www.ProppSolutions.com. The Alliance for Cryoglobulinemia was co-founded by Marianne Vennitti & Eileen Propp.

 

Cryoglobulinemia Explained: Paul Monach, M.D.

In this inverview, Dr. Monach explains how cryoglobulinemia affects the blood vessels, causes damage and is treated. Cryoglobulinemia is rare, not well known disease that can cause serious health issues for those living with it.

 

Cryoglobulinemia Simulation

This video uses art and stop motion photography to explain the science and how a rare autoimmune disease called Cryoglobulinemia works. Cryoglobulinemia is a type of vasculitis or blood vessel damage. Eileen Propp, coordinator, has lived with this disease for 16 years. Artist: Amy O’Hanlon https://aeohanlon.carbonmade.com, producer: Matt Hanlon www.thoughtfulduck.com

 

Living with Cryo: The Story of Eileen Propp

Eileen Propp was diagnosed with Essential Mixed Cryoglobulinemia (EMC) at the age of 26. Propp’s life up until that moment had been characterized by mysterious ailments, unexplained sickness, injuries and misdiagnosis. Since her diagnosis of EMC, she has gained an understanding of the disease and how to manage it.  Propp, 41, has endured some 30 plus surgeries, surgical procedures, numerous broken bones, blood clots, internal injuries, heart failure and various misdiagnoses. She has also obtained a Ph.D., been an American Sign Language interpreter and an advocate for people with disabilities. This documentary tells the story via interviews with Propp, her family, friends, coworkers and clients. It examines the physical, emotional and psychological aspects and impacts of living with a rare disease. Propp continues to live as a fierce self-advocate for herself and others while refusing to let her disease define her. She lives with her husband and service dog in the Bay Area of California. Featuring Dr. Monach of Boston University & Vasculitis Clinical Research Consortium, Artist Amy O’Hanlon, Musician Lauryn Newson, Lauryn@uoregon.edu and Producer Matt Hanlon.

 

About Alliance for Cryoglobulinemia:

Co-founded by Marianne Vennitti and Eileen Propp, Alliance for Cryoglobulinemia is an inclusive network of patients, caregivers, family, friends, medical professionals and other supporters dedicated to improving the quality of life for people with cryoglobulinemia. Our goal is create a platform that links to all efforts, campaigns, research, support and other resources related to cryoglobulinemia.  We utilize community networking, crowd-funding, peer-to-peer support and social media to advocate awareness, patient support, education and research. We hope these efforts will provide better treatments for patients and lead to the cause and a cure.

About Propp Solutions:
Eileen Propp founded Propp Solutions in 2012. The practice focuses on the intersection of people with disabilities and organizations. Propp Solutions is a consulting practice dedicated to teach advocacy, empowerment and positive organizational psychology to people navigating life and disability. Propp Solutions strives to educate health care companies how they can empower their patients to advocate for themselves.

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Global Genes Comments

  1. Jeannie Tofanelli says:

    Where have you been? I’ve researched since diagnosis in July 2011, and only today have found you. I too live in northern CA and look forward to becoming well acq uainted with this advocacy group. Jeannie

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