Alliance For Cryoglobulinemia

Alliance For Cryoglobulinemia
You Are RARE But NOT Alone

About Me

My photo
My Maddening Maze began suddenly, when I was just 47, with a plethora of autoimmune diseases. The life I knew changed forever due to chronic debilitating fatigue and pain. Faced with challenges beyond my understanding I began a never ending search for answers. I was later diagnosed in 2010 with a Rare Disease, Cryoglobulinemia Vasculitis. This disease causes my blood to gel in what appears to be temperatures lower than 70 degrees. When this phenomenon happens it can be life threatening causing organ damage, stroke, eye and vision loss along with a host of other complications. Both my kidneys and heart have been attacked by this uninvited guest and each day brings new challenges both physically and mentally. I live to find answers for myself and others that are afflicted with this rare disease and to find joy in living, whatever the cost. My passion and purpose is sharing the voice of the patient lost in the Maze and offering the face of Wellness in spite of it all.

Thursday, February 28, 2013

Media Announcement-Eileen Propp-Alliance for Cryoglobulinemia

Media Announcement February 27, 2013
Alliance for Cryoglobulinemia

Thank you for agreeing to publish and host the materials created in honor of National Rare Disease Day. We have five different videos published and available for hosting on your site(s). Each video is listed below with a summary, video length and direct link to embed on your site. Please let me know if you have any questions or need any more information. Your support is very much appreciated.


1. Be Rare!: A Cryoglobulinemia Public Service Announcement: 
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1:30 minute video uses footage of people living with cryoglobulinemia. It shows the strength, beauty and difference of people with cryoglobulinemia. 

Featuring:  Dr. Monach of Boston University & Vasculitis Clinical Research Consortium.
Alliance for Cryoglobulinemia was co-founded by Marianne Vennitti & Eileen Propp
2. Cryoglobulinemia Explained: Paul Monach, M.D.

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16 minute video

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

3. Cryoglobulinemia Simulation:

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1:21 minute 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.  
4.  Living with Cryo: Eileen Propp Trailer 

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2:49 minute trailer video for full length feature below.

5.  Living with Cryo: The Story of Eileen Propp 

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Full length feature 29 minutes
Description: 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.

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.

Eileen Propp, Ph.D. Organizational Psychology


Monday, January 28, 2013

Share your Rare Disease story with Pharmaphorum

Rare Disease Patients

Pharmaphorum is featuring Rare Diseases for the month of February. They will be creating a Public Service Announcement from videos of patients. If you are interested in sharing a piece of your story please following these instructions:

Record yourself on a webcam by answering these three questions.

1. What did it feel like when you were first diagnosed with a rare disease?
2. What has been the biggest obstacle to your life with this rare disease?
3. What can you share with other sufferers of rare diseases / what have you learned that will help them?

When completed send the video file to Rebecca Aris by February 8th.

She will download and edit it for you.

Thank you,