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.

Wednesday, October 22, 2014

 I can't breath! Emotional Breakdown

Was it my mind or my body that fell into the abyss of no return? Was it both? What happened? Where did I go?  It felt like I fell off the universe into a dimension of darkness I didn't know existed. Was it insanity, craziness, mania, hysteria, delusion? I could hear the voice of my husband but I couldn't find him in this place called hell. I frantically raced from room to room trying to escape the madness that was me. How do you run from yourself?  Where do you go?You disappear from what you know as self and let all pain gush through ever pore of your body, mind and spirit. The darkness shattered all possibilities of rational as my body cried for help. I continued to get lost deeper and deeper into nothingness where there was no me, no us, no love just gut wrenching pain and loneliness.

But why? Will anyone be able to explain to be why I broke? Modern medicine can't explain why I live with this rare disease, cryoglobulinemia. Is it the drugs, is it the disease, is it the prodigious amount of energy and discipline that it takes to keep my head above water to survive? Does living in survival mode for 16 years cause insanity? Or was it simply because I was outside in weather that dropped to 67 degrees? I have learned that my body cannot tolerate temperatures under 70 due to Cryo although most doctors won't agree with me.  But I know for a fact that when I ventured outside that day my body became numb, my ears and head felt as if they would explode until I found the respite of the house just steps away. I made a mistake and took a chance that the drugs were possibly healing me. We want to walk away and pretend, even for just a brief moment that our bodies are not failing us when we live with chronic illness even if it is just for one day.

I was sitting on top of the mountain that I have been climbing for 5 1/2 years, finally getting to experience a piece of life that some would call normalcy. I was holding onto HOPE and the drug Rituxan to give we a piece of my life back that I desperately yearned for. But then the unexpected happen and I tripped and fell and when I fell I broken into a thousand million pieces. After the fall I woke up lost and shatter knowing that I had to put all of the pieces back together again like so many times in the past. It's so hard to start over again when the maze has no exit. I'd like to think that my nervous system was affected by the unexpected reaction to the weather, or was it a combination of illness and life, is it the drugs or maybe I was doing to much in my new reality and on overload? I don't know and no one will be able to tell me I'm sure but I'm grateful that my husband, my best friend and my children picked me up and after only 3 days of hell I'm here writing about what was.

  • Today I will be grateful.
  • Today I will dismiss my madness and focus on healing.
  • Today I will reach out and touch at least one person who is hurting in some way.
  • Today I will start again at the bottom of the mountain and focus on the peak.
  • Today I will only think positive thoughts and not dwell on my fall that shattered my spirit.
  • Today I will find the Creator inside of me, the light that guides me back to acceptance and peace. 

If you fall let someone pick you up if you can't do it yourself. 


9-8-2012 Living in constant fear of dying

This morning I received a call from my oncologist telling me that my blood test for Cryoglobulinemia Vasculitis came back NEGATIVE.  This means that the LAB TEST was unable to detect any Cryoglobulins in my blood. It does not mean there aren't any. It does mean they have reduced enough to give me a negative reading. And that is great news.  I actually have had 3 incredibly awesome weeks and I feel like my body is getting stronger and healthier. I still don't know what tomorrow will bring with all the complications but for today I finally  have made progress after living with constant fear for the last 3 years and living like I was dying.

Never ever did I feel I would think about tomorrow.
Never did I think I would see normalcy of any kind.
Never did I think I would see joy in my husbands eyes.
Never did I think my body could recover.

So today I offer you a RAY OF HOPE for wherever you are on your journey

Never ever give up.

Tuesday, October 21, 2014

Tweet Chat -CoRDS Registry

Liz and Natalie from CoRDS met with me a week or so ago and we discussed what I would like to share about myself and the Alliance for Cryoglobulinemia on their next tweet chat.  After a quick half hour I realized that I didn't want the focus to be all on me. Our Rare Disease communities need support from one another, and questions answered about where to go next. I envision my voice as a voice for all our communities since each is so small in numbers.  Collectively we are larger that the patients of AIDS and HIV put together.  That's allot of people living in isolation without answers on this lonely road to a treatment.  There is no cure! Some may find treatment and together we can make it happen.

We are meeting on tweetchat October 26th, Noon CST, to talk about the obsticales and challenges, our progress, and our accomplishments we face on our journey. 

Please join Natalie, from CoRDS, myself and others from our Rare Disease communities in hopes to create a united force to raise awareness for us the patients, advocates and communiites.

This online Twitter chat hosted by Wego Health will take place this Friday worldwide at 2pm-3pm Eastern Time in this online chat room using the hashtag #HaRoundtable ~> Chat Here!

#RarePov VERY OLD POST FROM 10-10-13

I tried to thank each of you on Twitter, but I wanted to say THANK YOU again (in unlimited characters) for the successful #raredisease #RarePov Tweetchat last Thursday. 

We intended to go for 30 minutes but the conversation lasted for more than an hour, past 5pm ET.  We engaged 163 contributors and potentially reached more than 302,000 twitter accounts (according to Tweetreach:  #RarePOV trendednationally during the chat – that is a lot of awareness!

We have a complete Storify that might be of interest: I am hoping to have time to create a shorter one to capture a few noteworthy responses to each question as well as a few representative Tweets of the dialogue between participants.

Thank you again for your efforts to promote the Tweetchat in advance and for sharing your insights during the chat.  I’d like to host another #RarePOV Tweetchat the week of either January 27th or February 3rd to share resources and highlight opportunities to coordinate and leverage activities for International Rare Disease Day on February 28th. I hope you will join me then too, to continue the dialogue!


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: 
Embed link: <iframe width="560" height="315" src="" frameborder="0" allowfullscreen></iframe>

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.

Embed link: <iframe width="560" height="315" src="" frameborder="0" allowfullscreen></iframe>

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:

Embed link: <iframe width="560" height="315" src="" frameborder="0" allowfullscreen></iframe>

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 

Embed Link: <iframe width="560" height="315" src="" frameborder="0" allowfullscreen></iframe>

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