MILWAUKEE, March 1, 2017 /PRNewswire/ -- On March 5, 2017, CVSA USA/Canada will be joining forces with CVSA Organizations throughout the world to promote awareness of Cyclic Vomiting Syndrome (CVS). CVS is a debilitating condition characterized by episodes of severe nausea and persistent vomiting, interspersed with periods of wellness. Estimates show CVS affects about 2 percent of school-aged children. Many of these children are misdiagnosed, and many adults are undiagnosed or wrongly diagnosed as having eating disorders. Treatment often requires hospitalization, IV fluids, a number of medications, and sedation. At it's worst the disease can result in serious complications like tearing of the esophagus and even death. CVS affects people young and old, all over the world. CVS often prevents individuals and their families from enjoying normal lives.
Canada, Denmark, Germany, Ireland, Italy, Japan, the Netherlands, Spain, United Kingdom, and the USA along with more than 20 other countries are joining together to make sure that there's a global, cohesive effort to make sure this condition is understood. By working together with a cohesive, worldwide message we can make sure people know this a more common syndrome than they might think. By sharing information and resources with one another we can reach both sufferers and those who still may be undiagnosed.
"I helped found the CVSA non-profit association in the US when my own daughter was diagnosed 22 years ago", said Kathleen Adams, President and Cofounder of CVSA, USA. We've grown from a handful of people to hundreds of members, and we can now extend our reach even further with our international efforts."
"By working together across 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."
This year the US chapter focused its resources on preparing guidelines to help adult CVS patients get the treatment they need in emergency rooms and walk-in clinics, places where misdiagnosis and mismanagement of the patient's symptoms are most frequent. CVSA Members are being asked to promote CVS Awareness on March 5th through social media, newspapers, radio, and TV. Some of the resources we have made available to share with media outlets include:
- A sample template for how to make medical professionals aware of the most effective treatmentshttp://cvsaonline.org/wp-content/uploads/2017/02/doctor-letter-Jan-Wood-1.pdfhttp://cvsaonline.org/wp-content/uploads/2017/02/doctor-letter-Jan-Wood-1.pdf
- A slide show for school-aged children to share with their classmates. http://cvsaonline.org/international-day-of-cvs-awareness/http://cvsaonline.org/international-day-of-cvs-awareness/
- A concise description of what CVS is and what its symptoms are: http://cvsaonline.org/what-is-cvs/
- Interviews with CVS Staff and Board of Directors to gain a more personal look at CVS, Research and Treatment options.
- Copies of our Code V Newsletters (Code V is the word hospital staff's use to announce instances of vomiting). The newsletters contain stories of hope, new research studies, practical tips for living with CVS and more.
- Guide to new research studies http://cvsaonline.org/join-research-studies/http://cvsaonline.org/join-research-studies/
- Stories of teen sufferers in their own words on our blog and our emotionally wrenching Facebook pages.
- Tools including hospital hints, how to navigate school and job issues, and medication can be found on the website at: http://cvsaonline.org
- News clips, film made by CVS sufferers and other media links: http://cvsaonline.org/cvs-media-links/ Chandra Wilson, star 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/
For more Information, Materials, or to Set Up Interviews with Members
please contact the Cyclic Vomiting Syndrome Association:
Program Director, CVSA USA/Canada
About CVSAOnline – USA/Canada
CVSA, a non-profit institution, was founded in 1993, when a group of parents and patients who had been dealing with CVS without a diagnosis or hope of treatment banned together. We hold annual conferences, support medical research and dissemination of scientific research, hold fundraisers, maintain a medical advisory board, and operate a website and social media sites to offer hope and assistance to those with Cyclic Vomiting Syndrome and their families.
HOPE STARTS HERE!
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