ELKHORN, Wis., Feb. 23, 2016 /PRNewswire/ -- On March 5, 2016, for the second year, CVSA USA/Canada will be joining forces with CVS Organizations throughout the world to promote awareness of Cyclic Vomiting Syndrome. CVS is a debilitating condition characterized by episodes of severe nausea and persistent vomiting. Between episodes there are periods of wellness. Estimates show CVS affects about two percent of school-aged children. There is also an adult onset of the syndrome. Both children and adults are often misdiagnosed, causing children to suffer through unnecessary procedures, and causing adults to be wrongly treated as everything from drug addicts to psychotics. Treatment often requires hospitalization, IV fluids, medications, and sedation. At its worst, the disease can result in serious complications like tearing of the esophagus and even death. The disease affects people young and old, all over the world.
CVSA associations in Australia, Denmark, Germany, Ireland, Italy, Japan, the Netherlands, Spain, the United Kingdom, and the USA/Canada, along with many of our other 27 contact countries, are joining together to create a cohesive global movement around CVS issues. By working together, we can inform people worldwide that this is a common syndrome, and ensure that doctors consider it in their diagnosis. By sharing information and resources we can reach both sufferers and those who still may be undiagnosed.
"I helped found the CVSA USA/Canada, as a non-profit association, when my own daughter was diagnosed 23 years ago after being undiagnosed for 11 years," said Kathleen Adams, President of the Board of Directors of CVSA USA/Canada. "We have grown from a handful of people to thousands of members, friends and professionals. I hope our combined efforts can spare those with CVS some of the medical mystery hunt we went on years ago."
"By working together with other countries we reinforce that CVS is a global issue affecting the lives of kids and adults alike. Education is key," said Robin Dover, President of CVSA, UK. "As we raise awareness of CVS and the associated symptoms, we are always amazed by how many people have a personal connection to someone who fits the description of a CVS sufferer. Together we provide hope."
Members are being asked to promote CVS Awareness on March 5th through the Internet, social media, newspapers, radio and television.
Some of the resources we have made available to share with media outlets include:
- A concise description of CVS and its symptoms: http://cvsaonline.org/what-is-cvs/.
- Interviews with CVS staff, medical practitioners, and members of the Board of Directors to gain a more personal look at CVS research and treatment options: email@example.com for interview requests
- Copies of the Code 'V' newsletter: firstname.lastname@example.org
- Stories/videos of teen sufferers: http://cvsaonline.org/blog/http://cvsaonline.org/blog/
- Tools including hospital hints, how to navigate school and job issues, and medication: http://cvsaonline.org under the "For Patients" menu
- Several media links including a short film made by CVS sufferers: http://cvsaonline.org/cvs-media-links/
- Chandra Wilson of Grey's Anatomy has a daughter who suffers from CVS. See what she says about getting the medical community and families more knowledgeable about this disease: http://cvsaonline.org/greys-anatomy-chandra-wilson/
- A free downloadable information guide: http://ebookslistrc.jimdo.com/2013/07/08/download-ebook-cyclic-vomiting-syndrome-a-medical-dictionary-bibliography-and-pdf/
For more information, please contact the Cyclic Vomiting Syndrome Association:
Ruth Novak – CVSA Program Director
CVSA Facebook Page: www.facebook.com/CyclicVomitingSyndromeAssociation/
About the Cyclic Vomiting Syndrome Association – USA/Canada
The CVSA is a non-profit association founded in 1993 by a group of parents and patients who recognized a need for an organization focused on this debilitating disease. We hold biennial conferences, support medical research, and maintain a medical advisory board. Our dissemination channels include a website, social media sites, printed and online newsletters.
HOPE STARTS HERE!