CVS Awareness

With Cyclic Vomiting Syndrome being ranked as a top rare disease, awareness is very important. There are 2 events in particular coming up:

1. Rare Disease Day- February 28th                                                                                                                                 This year’s theme is Living with a Rare Disease-“Day-by-Day, Hand-in-hand.” This International Day of Awareness focuses on the daily lives of patients, families and caregivers who are Living with a Rare Disease. Currently there are over 6,000 different rare diseases directly affecting people’s daily lives. 
2. International Day of CVS Awareness- March 5                                                                                                              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 that affects about 2 percent of school-aged children and many adults who are mis or undiagnosed. Visit: http://cvsaonline.org/international-day-of-cvs-awareness/ for more information. Join us for 3 different phone support groups!     

6 Things Only CVS Caregivers/Family Members Understand

1. Events and outings can be interrupted at a moments notice.

An episode can strike at a moment’s notice for no specific reason. Vacations, school field trips, church mass or even simple dinners can be interrupted. This is why it is so vital that the family members of CVS sufferers always have a spit up bowl and abortive medication on hand.

2.  School nurses are your best friends.

It is important to instruct the school nurse and supply them with current medications. Instructions on what specifically to do should be given as well.

3.  Spending nights and days in the Emergency Department is the norm.

Moms, dads, or even siblings know the inside of an Emergency Department all too well. I remember one particular long hospital stay where my mom stayed with me 24/7 and slept on a make shift small couch bed. 

4.  Crying and getting emotional occurs often.

It is heartbreaking to see your child or loved one sick and not being able to do anything about it.

5.  You know what an Episode Diary is.

Recording and keeping track of episodes is helpful for reporting to the doctors. It can also help with preventative planning by knowing what things to avoid in the future. For example, sleepovers, strong odors, and concussions have all been contributors to some of my episodes.

6.  Friends, family members, or co-workers don’t understand why your child is getting sick.

CVS is a very rare and serious disease that others don’t understand. It is common occurrence for people, including medical professionals to not understand why a child is sick. It is important to advocate for the CVS patient and raise awareness. It is not your fault that your child or loved one is sick. CVS can strike at anytime for any reason.

International Day of CVS Awareness

Mark your calendars for International Day of CVS Awareness!

On March 5, 2015 CVSA USA/Canada will be partnering with other CVSA organizations throughout the world. The current participants include the United Kingdom, Ireland, Spain, Italy, Japan, Netherlands, and Germany.

We are currently in the planning stage, but hope our members will promote CVS Awareness through social media, newspapers, radio, and TV.

Have a great idea on how to raise awareness? Contact CVSA at cvsa@cvsaonline.org.

Holiday Tips

The holidays are a great time to have fun and spend time with family. However, it can also bring about triggers for CVS sufferers.

Some helpful tips:

• Exercise and be active
• Get proper sleep
• Learn from the past (avoid previous year triggers)
• Treat sinus and cold problems
• Avoid foods that trigger episodes or foods with additives
• Try to keep stress to a minimum

For help and support visit http://www.cvsaonline.org

6 Things Only People with CVS Understand

You’ve Seen Every Type of Specialist

From Neurologists to Psychologists people with CVS have seen them all. One specialist will direct you to go see another specialist, simply because CVS is so rare they don’t know what is causing us to get sick.

The Emergency Department Nurses (and Doctors) at your Local Hospital Know You and Your Family by Name

CVS patients know the routine of heading to the Emergency Department all too well. With a lot of sufferers having episodes every month or more, sometimes our home care remedies don’t do the trick, so the only option is to hop in the car and head to our local Emergency Department to see if they can abort the episode. Some things to bring for trips to the ED include Kleenex, a throw-up bucket, water, episode diary, and our favorite blanket (for children sufferers). 

You Name a Medical Test, We’ve Had It!

CVS patients have gone through many medical tests per doctors requests to try to pinpoint what is causing our illness. However, as many of us know, there is no known cause of CVS. Some typical tests include EKG, CAT Scan, Ultrasound, Spinal Tap, Blood Tests, etc.  

Our Classmates, Co-Workers, Friends, and Family Members Don’t Understand Why We Can’t Do Certain Things

Those who have been suffering from CVS for awhile tend to stay away from previous things that have caused episodes for us in the past Most people don’t understand, or comprehend why we refuse to do certain things. For example, for me I refrain from drinking alcohol excessively, because I know after one or two small drinks I start to feel funny. When it comes to preventing episodes CVS sufferers will go to great lengths to make sure that an episode does not occur. Some people even stay away from certain types of food (i.e. rich or ethnic). 

Silence, Darkness, & Sleep Are Our Best Friends

During an episode CVS sufferers have a sensitivity to noise and light. A lot of sufferers need to be in a room where they can sleep in silence and complete darkness. 

We Are All Too Familiar With The “BRAT” Diet

The “BRAT” diet or bland diet is known for being the bananas, rice, applesauce, and toast diet. This diet is typical for CVS sufferers to abide by during and after an episode. These foods are low in fiber, so they don’t cause gastrointestinal upset.

In the Spotlight: Children’s Hospital of Wisconsin

The Children’s Hospital of Wisconsin located conveniently in Milwaukee is home to the largest Cyclic Vomiting Syndrome Program in the United States.

One notable staff member, Dr. Li is known as one of the world-renowned experts in the treatment and research of Cyclic Vomiting Syndrome.

Before you and your child even have your first visit, a team of medical professionals (psychologists, neurologists, researchers, nurses) review pertinent medical information, so they can better assist in treating your child’s CVS.

Meet Dr. Li

 

 

 

Happy Rare Disease Day 2014!

Happy Rare Disease Day 2014!.

Happy Rare Disease Day 2014!

Every year on the last day of February people around the globe celebrate and raise awareness for rare diseases. The day is designed to raise awareness among the general public as well as decision-makers about rare diseases and how they impact patients’ lives. This year marks the 7th annual Rare Disease Day!

In honor of the day CNN Health published an article entitle “Children Face Rare Diseases with Bravery.” In the article Cyclic Vomiting Syndrome and Ali, an 11 year old sufferer were featured.

Here is a link to Ali’s full story about Fighting With Cyclic Vomiting Syndrome: http://ireport.cnn.com/docs/DOC-1079732.

CVS, A Story of Hope

CVS, A Story of Hope.