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!

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

I am 24 years old, a marketing/public relations professional, road race runner, and a basketball enthusiast. One thing that most people don’t know about me is that I have been suffering from a rare disease (Cyclic Vomiting Syndrome) for about 18 years. When I was diagnosed in first grade I was lucky that we lived in Waukesha County near Children’s Hospital of Wisconsin, where there was a specialist to see.

Living with CVS is difficult and most people don’t understand that certain normal activities for them can cause an episode for CVS sufferers. I have been to the ER numerous times, had extended stays at the hospital, and been through too many tests to count. Throughout the years I have learned to stay away from certain things in order to prevent an episode, but I don’t let it control my life.

I was able to go away to college and I graduated Summa Cum Laude from Valparaiso University. Since high school I have participated in numerous running races including half marathons. Lastly, I am a young professional living on my own.
I think that it is important for younger CVS sufferers to not let CVS stop them from participating in sports, musical activities, and other extra curricular activities.

Share your story of hope on www.cvsaonline.org!

Holiday Advice

The Winter 2013 “CODE” (the Cyclic Vomiting Syndrome Association USA/Canada Newsletter) came out recently. I wanted to share some helpful winter and holiday tips and advice that once included in the newsletter.

“Fall and winter can be a tough time of year for people with CVS. CVS patients often have more episodes during these months for a lot of reasons, including the excitement and stress of the holidays, difficulty remaining physically active when the weather turns cold, storms, and illnesses. Remember that physical activity can help CVS patients stay healthy. Staying physically active improves mitochondrial function, which helps prevent CVS episodes. Physical activity is also a great way to manage stress and to “burn off” the chemicals that are produced in your body when you are excited or experiencing stress. Dress warmly when you go outside to reduce the physical stress of adjusting to temperature change. Be sure to practice the principals of good hygiene to reduce your risk of illnesses – your best defense against the common cold and the flu is to wash your hands regularly. And, don’t forget to talk to your doctor about whether a flu shot would be a good way for you to reduce your risk of getting the flu. As always, be sure to make time to have fun doing things you enjoy!”

Credits: CODE, Winter 2013 Newsletter of the Cyclic Vomiting Syndrome Association USA/Canada

 

Visit www.cvsaonline.org for more resources and information!