Submitted by: Blynda Killian
Our family’s CVS story started out like so many others affected by cyclic vomiting syndrome. We had absolutely no explanation for why my son was so sick all the time. I did what most people looking for answers have done. I fell victim to Dr. Google.
I asked Dr. Google, “Why can’t my kid stop throwing up.” That simple query changed our lives.
Dr. Google gave me what no one else had. A direction. A thought. An idea of what could be happening to him. Cyclic Vomiting Syndrome. Three words that would alter all of our lives.
Thanks to Dr. Google we found an organization that helped support us and gave us ways to help provide information to our physicians. Dr. Google helped us find the Cyclic Vomiting Syndrome Association or CVSA. We had a place where people understood. Where there were people just like us, that understood and experienced our same struggles. Where people talked about their challenges, ideas, tips, tricks, and hints for living with CVS.
It didn’t stop the horrific encounters in the ER or with a lot of doctors that don’t know about CVS. There was even a time that I was accused of poisoning my own child because there were no other explanations for him being so sick. But, we did learn to not give up or give in, we learned ways to advocate and live with CVS. CVSA and the people volunteering their time to talk to others, host support calls, exchange emails, and the CVSA message boards were my lifelines.
During the worst part of our journey, we had a hospital give up on us. They had told us there was nothing else they could do to help my son. They had tried everything they could think of. Imagine hearing that! The doctors we are taught to trust to fix us, couldn’t. My son ended up in organ failure and almost didn’t survive. He was 13 years old at the time.
My son ended up being a case study, a medical experiment. Inspired by this action and my son, my hero, I decided that I too could help others. I started supporting CVSA where I could. I needed to do something, “that would help others not go through what we had.” Using my voice, our experiences, our fears, our setbacks, our struggles, and eventually our successes to help support and change the lives of others that are impacted by CVS.
Our experiences and challenges with CVS have shaped our lives. Now, they also drive me to continue to make a difference for the people living with CVS.
Welcome to the official website for the Cyclic Vomiting Syndrome Association (CVSA). As you probably agree, CVSA is a very unpleasant name for a non-profit organization, but CVS is an extremely unpleasant illness so we need to make it easy for people to find us. I hope that at the minimum, you will find our website informative about CVS and hopefully go beyond that to find out more about our work of outreach to those still suffering in isolation with this mysterious and disruptive illness.
CVSA was founded by myself and a handful of parents and patients in 1993, after the majority of the founders had been dealing with CVS without a diagnosis or hope of treatment. My daughter was plagued with CVS episodes for eleven years before she was diagnosed. We continue to work past the unpleasant name, against the odds of a small non-profit, and beyond the frequent medical skeptics. CVS causes far too much suffering for us to stop. Don’t hesitate to share your thoughts and/or needs with us as you discover much-needed information about this difficult illness.
Kathleen Adams, B.S.N., R.N.
President Emerita and Co-founder
Cyclic Vomiting Syndrome Association