CVSA IS EXCITED ABOUT 2 UPCOMING FUNDRAISING EVENTS
Live in the Tri-State area? Mark your calendars for May 11th!
Join us on May 11t for The Little Black Dress Fundraiser!
An evening of hope, great food, good company, live music, raffles and prizes await you!
Dress in your Little Black Dress or for a summer garden party!
For more information go to: http://www.cvsaonline.org/pdfs/LittleBlackDress13.pdf
Live in the Midwest?
Join us for the 7th Annual 5K Run/Walk to Stop the Cycle of CVS on Saturday, June 1st
For more info visit: http://www.cvsaonline.org/pdfs/WI_Walk_Brochure_2013.pdf
On February 28th people around the world will be celebrating Rare Disease Day. This international advocacy day is all about raising awareness for rare diseases. Visit http://rarediseaseday.us for more information!
Cyclic Vomiting Syndrome has been ranked on the Discovery Fit & Health Top 10 Rare Diseases List as #9.
Cyclic Vomiting Syndrome (CVS) is a rare disorder characterized by recurrent episodes of severe nausea and vomiting. An episode may last for a few hours to several days and then is followed by a period of time during which affected individuals are free of severe nausea and vomiting. Additional symptoms that are often present during an episode include paleness of the skin (pallor), lack of energy (lethargy), abdominal pain and headaches. CVS affects children and adults and the exact cause of CVS is unknown.
For some helpful resources view the video below or visit http://www.cvsaonline.org/
Children’s Hospital of WI (Locations in Milwaukee & Fox Valley)
-Is recognized as the largest program of its kind in the country that focuses specifically on treating children with CVS. The program is lead by Dr. Li, a pediatric gastroenterologist who happens to be a world-renowned expert in treating and researching CVS.
-before a child will be seen the team of psychologists, neurologists, researchers and nurses spend hours reviewing medical records, standardized questionnaire and a diary of vomiting episodes. After that the child and parents meet with the team to discuss how to best assist the child.
-Facts about CVS: based on 2 population surveys, it affects 1 in 50 school-aged children and causes school-aged children to miss an average of 24 days of school per year.
-treatment is supportive with great importance placed on early intervention. Medication trials sometimes succeed in preventing, shortening, or aborting episodes. Long-term management involves a responsive collaborative doctor-patient-family relationship.
-Specialty care providers who treat this condition include Dr. David Rothner and Dr. Sumit Parikh
“Cyclic Vomiting Syndrome Program.” Children’s Hospital of WI. 2012. 7 Feb. 2013. <https://www.chw.org/display/PPF/DocID/34133/Nav/1/router.asp>.
“Cyclic Vomiting Syndrome.” Cleveland Clinic. 2013. 7 Feb. 2013. <http://my.clevelandclinic.org/neurological_institute/services/pediatric_neurology/cyclic_vomiting.aspx>.
WATCH THE TALK & GREY’S ANATOMY ON NOVEMBER 15th
CVSA (Cyclic Vomiting Syndrome Association) recently announced the exciting news about how the hit TV show Grey’s Anatomy (ABC Network) will feature an adult patient with CVS (Cyclic Vomiting Syndrome) during the November 15th episode.
This is an exciting opportunity for CVS (Cyclic Vomiting Syndrome) and CVSA (Cyclic Vomiting Syndrome Association) to get exposure and educate more people about the rare disease that so few people understand, but many live with.
Chandra Wilson, “Dr. Bailey” the International Spokesperson for CVSA (Cyclic Vomiting Syndrome Association) will direct this particular episode. In addition she will appear on “The Talk” (CBS Network) on November 15th to promote the episode.
MAKE SURE YOU TUNE IN TO GREY’S ANATOMY ON NOVEMBER 15th!
Researchers from Froedtert Hospital & the Medical College of Wisconsin will be studying cyclic vomiting syndrome due to a recent grant they received from the Clinical and Translational Institute of Southeastern Wisconsin.
The research will focus on the relationship between stress and endocannabinoid (natural brain compounds known to play a role in processes involving appetite, pain and memory) concentrations in the body and what role they play in cyclic vomiting syndrome.
Below is the link to the article:
College can be the best years of your life and there is no reason that CVS (Cyclic Vomiting Syndrome) should get in your way of enjoying college life.
Below you will find some helpful tips:
- Take advantage of your school’s university health resources. Go to the health center and make sure that they are aware of your condition and can help you if you get an episode. But, also make sure that you know where the closest Emergency Department is located.
- Talk to your professors. If you do get an episode it might interfere with your class work and letting your professors know right away will make them more understanding if and when an episode occurs.
- Talk to your roommate as well as your RA (Resident Assistant). Let them know about your condition and how they can help if an episode occurs.
- Talk to your doctor before you leave. Set up a plan of action for when an episode occurs. For example make sure that you have extra prescriptions that you can take with you to the Emergency Department (if needed), as well as a packet of information explaining CVS in detail to give to the nurses or doctors.
- 2 important things to pack would be a couple of spit up bowls just in case, and your prescriptions.
- Lastly, make sure that you take advantage of all of the extracurricular activities that your school has to offer and have fun!
The beginning of school is right around the corner and pre-planning for your CVS sufferer can be extremely helpful.
Some helpful tips include:
*Making sure that the school nurse not only has your child’s medication, but knows what works best for treating your child (i.e. going straight home, resting in the dark in the nurse’s office)
*Inform all of your child’s teachers of their condition and make sure that they understand and will be compassionate if and when an episode hits
*If your child participates in after school activities it might be a good idea to inform their advisor or coaches about their condition and make sure that they have your child’s medication as well
*Lastly, make sure your child is eating nutritious meals at breakfast and lunch and drinking fluids throughout the day