Rare Disease Awareness Network

Together We Can
SEPTEMBER 15, 2012 VOLUME 5, NUMBER 1

Welcome!
Welcome to another exciting edition of the Rare Disease Awareness Networks newsletter. I feel like so much time has passed since we published in August! We have lots to catch you up on! Here is the news in brief: The IRS sent their official notice that we will be hearing from them in 72 days regarding our tax-exempt status. I am hoping that they will give it the thumbs up! We have reached 2,225 likes on Facebook! Apple Peach Festival was a HUGE success both in raising awareness and raising funds! (see page three for details) We started the Faces of RDAN campaign and have over 15 participants!

Our mission is to provide awareness, advocacy, and education regarding all aspects of Rare Diseases.

There has been a whole lot more, I am sure. But in the interest of space, that will have to do for now! Check out the Facebook page to see the rest of the happenings. Thanks so much for signing up to receive this correspondence. We hope that you will enjoy what you read and will like it so much you will be on the lookout for next months edition! Happy reading!!!

September News
September is the month to raise awareness for the following illnesses: ITP Hydrocephalus Lymphoma Leukemia Sickle Cell Reyes Syndrome Celiac Disease Pfizer Pharmaceuticals in Groton, Connecticut has asked that Becka (the President of Rare Disease Awareness Network, Corp.) come to speak at an event at their research facility headquarters on Thursday, September 20th. It is a wonderful example of a drug company reaching out to the patients they serve in the hopes of learning how peoples lives are impacted by the work that they do. This is a perfect example of adding a face to what could easily become a faceless job. Many, many thanks go out to Pfizer for this wonderful opportunity! Check back in October to find out how it goes! Wish me luck!!

Lessons to Learn From Zebra

Do you know why zebras have stripes? Well, some scientists say it is to confuse their enemies the lion. When the zebras are in a herd, the lion cannot tell where one zebra begins and the other one ends. By simply standing together, they provide one another with protection and support. That is a great lesson to learnnot the confusing the lions part, but the standing together part. If we work together, we too can provide each other with protection and support. Remember, when we stand alone, we are rare. But when we stand together, we can accomplish anything!

Spotlight on Essential Mixed Cryoglobulinemia

Written by Marianne Vennitti I Care Because Im Rare! In July 2010 I was formally diagnosed with Essential Mixed Cryoglobulinemia (EMC), a rare autoimmune disease. In the months prior to my diagnosis, I experienced severe anemia, multiple infections, and kidney failure. I was chronically ill, weak, and unable to perform simple tasks. My diagnosis did not come easily. I went through 10 months of extensive testing, evaluations, and biopsies that helped the specialist at Mayo Clinic come to my plethora of diagnoses: Essential Mixed Cryoglobulinemia, Hemolytic Anemia, Leukocytoclastic Vasculitis and Monoclonal Gammopathy. Cryoglobulinemia is the presence of abnormal proteins in the blood. These proteins become thick in cold temperatures. It is not yet known why they become solid at low temperatures or at what temperature this occurs at. Cryoglobulinemia can cause damage and inflammation to any blood vessels throughout the body, which can lead to organ failure or stroke. When I first was diagnosed with EMC, I was told to "stay warm. Stay warm is a general statement that did not provide me with adequate information to care for myself. I developed congestive heart in January of 2010 due to the lack of information on preventative care. I have learned from experience and other patients that it is my responsibility to discover what temperature causes this precipitation in my blood. I am affected by both outside changing temperature, air conditioning, fluids that enter my body, and water that touches my body. When I was first diagnosed, I thought I only needed to worry about the extreme cold, but I quickly learned there are many variables that can cause flares and severe complications. Living in New Jersey is very difficult considering our warm season is very short. I only go outside if and when necessary, and when I do, my car is preheated. My face, as well as every part of my body, must be sheltered from the extremities. The hospital is one of my worst enemies. Because my disease is so rare, doctors do not always realize the proper protocol necessary when treating me. If I do not have a doctor and staff willing to listen to the knowledge I have acquired about my disease, I will be exposed to cold examining rooms, procedure rooms, operating rooms, cold infusions, and cold instruments. This is life-threatening to me. I believe that patients are the strongest advocates for each particular rare disease. I experience severe anemia leading to blood transfusions, extreme fatigue, muscle weakness, joint pain, memory loss, confusion, and reduction in kidney function when Cryo is active in my body. My legs and feet swell to so much so that I need to walk with a cane. Sometimes I cannot walk at all due to extreme pain. Adjusting to illness has been a difficult process for me. I find it maddening trying to pull all the pieces together. I continue to struggle to find a productive stream in this ocean of illness. Isolation and fear invaded my life when I was diagnosed with EMC. To combat this mental state I started educating myself about rare diseases. In my greatest moments of fear and despair, I made a promise to myself that I would never let another person feel lost and unsupported living with this disease. Through networking, collaboration, and connections, the dream is now a reality via the Facebook Cryoglobulinemia Vasculitis Organization group. What the Cryoglobulinemia community needs now is research, clinical trials, and support groups. As a community we need to be willing to share our day-to-day experiences, medications, and treatments to ensure a better future for other patients with this disease. As the Assistant Director of CVO, I will continue to share my networks and social media connections with our rare disease community. Let us join forces and begin the search for a cure.

A definitive connection between these diseases is as unclear to me as it is to my doctors. Clearly the diseases are intertwined, but more research is needed to understand what a symptom is or what causes one thing versus another. For twelve years prior to my EMC diagnosis I struggled with other health problems that were labeled as:
1. 2. 3.

Lyme Disease Fibromyalgia Chronic Fatigue Syndrome Rheumatoid Arthritis Raynauds Thyroid Disease

4.

5. 6.

Snapshots
Pictures: 1. Our blow-up zebra attracted a lot of customers on day two of the festival. Business was a bit slow without him on Saturday. 2. Our booth was decked out in zebra stripes! 3. Carries son loved his zebra stripes with the star on it that was painted on at our booth. 4. The official Apple Peach poster. Next year we hope to see our name on it somewhere! LOL! The Apple Peach Festival is an annual event in Acushnet, Massachusetts. It was recommended by members of our Facebook Family that we arrange to have a booth there to sell Rare Disease Awareness gear so we can all be outfitted for winter! Well, on September 8-9, we did just that and it was a HUGE success!! We met a ton of people and spoke for two solid days about Rare Disease Awareness. We have had a few new people join our FB family as a result. Be on the lookout for their stories to be featured on our FB page soon! Here are a few pics from the event!!

RDAN Board: Rebecca Alves, President Susan Green, VP Jamie Alves, Secretary Jennifer DaCosta, Treasurer Patricia McArdle, Esq., Director Dawn Barksdale, RN, Director Rosemary Arruda, Director Liz Costa, Director Jennifer Bolarinho, Director

Contact Information:
Please feel free to contact us at any time. Send us an email at savebecka@comcast.net. Also, we can be reached through the mail at: Rare Disease Awareness Network PO Box 30061 Acushnet, Massachusetts 02743

Facebook:
Come join our Facebook family!! Like us at www.facebook.com/SaveBecka.

Thank You!!
We cannot thank you enough for your support!! We hope you have enjoyed a few moments with us and hope you will be back for more next month! Thanks a bunch!!