NEVER GIVE UP - EVER

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.

Tweet Chat -CoRDS Registry

OLD POST OF 2012

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: https://tweetreach.com/share/reports/7eaec68792993500a82131c81231a582b00c892e?v=2).  #RarePOV trendednationally during the chat – that is a lot of awareness!

We have a complete Storify that might be of interest:  http://storify.com/phrma/phrma-rarepov-tweet-chat/. 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 27^th or February 3^rd to share resources and highlight opportunities to coordinate and leverage activities for International Rare Disease Day on February 28^th. I hope you will join me then too, to continue the dialogue!

Sincerely,

Stephanie

Media Announcement-Eileen Propp-Alliance for Cryoglobulinemia

Media Announcement February 27, 2013
Alliance for Cryoglobulinemia

www.allianceforcryo.org <http://www.allianceforcryo.org/> 

Contact: Eileen Propp
(925) 381-8750
eileen@proppsolutions.com

FOR IMMEDIATE RELEASE
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.

Videos

1. Be Rare!: A Cryoglobulinemia Public Service Announcement: 

Video link: http://youtu.be/t56kaPfjbeo<http://youtu.be/t56kaPfjbeo> 

Embed link: <iframe width="560" height="315" src="http://www.youtube.com/embed/t56kaPfjbeo" 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.

Producer: Matt Hanlon, www.thoughtfulduck.com<http://www.thoughtfulduck.com/>

Sponsored by:  www.allianceforcryo.org &<http://www.allianceforcryo.org/>www.ProppSolutions.com <http://www.proppsolutions.com/> 

Alliance for Cryoglobulinemia was co-founded by Marianne Vennitti & Eileen Propp

<http://www.thoughtfulduck.com/> 

2. Cryoglobulinemia Explained: Paul Monach, M.D.

Video link: http://youtu.be/ntLD6dLVDr0<http://youtu.be/ntLD6dLVDr0> 

Embed link: <iframe width="560" height="315" src="http://www.youtube.com/embed/ntLD6dLVDr0" 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:

Video link: http://youtu.be/YZm5xO5D7AU<http://youtu.be/YZm5xO5D7AU> 

Embed link: <iframe width="560" height="315" src="http://www.youtube.com/embed/YZm5xO5D7AU" 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.  

Artist: Amy O’Hanlon http://aeohanlon.carbonmade.com <http://aeohanlon.carbonmade.com/>

Producer: Matt Hanlon www.thoughtfulduck.com<http://www.thoughtfulduck.com/> 

4.  Living with Cryo: Eileen Propp Trailer 

Video link: http://youtu.be/-cMJdqZuC8A<http://youtu.be/-cMJdqZuC8A> 

Embed Link: <iframe width="560" height="315" src="http://www.youtube.com/embed/-cMJdqZuC8A" frameborder="0" allowfullscreen></iframe>
2:49 minute trailer video for full length feature below.
5.  Living with Cryo: The Story of Eileen Propp 

Video link: http://youtu.be/27C9ihSHgec<http://youtu.be/27C9ihSHgec> 

Embed Link: <iframe width="560" height="315" src="http://www.youtube.com/embed/27C9ihSHgec" 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.

Artist: Amy O’Hanlon, Artisthttp://aeohanlon.carbonmade.com<http://aeohanlon.carbonmade.com/>

Musician:  Lauryn Newson, Lauryn@uoregon.edu

Producer: Matt Hanlon, www.thoughtfulduck.com<http://www.thoughtfulduck.com/> 

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
 

Share your Rare Disease story with Pharmaphorum

http://www.rarediseaseday.org/article/download

Rare Disease Patients

http://www.pharmaphorum.com/

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.

https://www.wetransfer.com/

She will download and edit it for you.

Thank you,
LaughingNana