Battling Cyclic Vomiting Syndrome
Hello! My name is Diane and I was diagnosed with Cyclic Vomiting Syndrome (CVS) in 2010. This is a rare disease that has been documented in medical journals since 1882, there is very little research on the physiology of this illness because it is so rare and there is not a lot of funding and patients available for research. This syndrome has been classified as an abdominal migraine that causes uncontrollable vomiting and excrutiating pain, I have episode-free periods of time that can last days, weeks, or months however, the past two years my episodes have gotten worse and increased in frequency as well as severity. There are a couple of different theories that exist that indicate CVS could be caused from a Mitochondrial disfunction in the cells, an over stimulated or under stimulated Vagus nerve, or related to stress and hormones in some way. Cyclic Vomiting Syndrome mainly affects children but it can carry over into adulthood or begin randonmly as an adult. This disease causes me to to have anywhere from 30-50 visits to the emergency room each year due to the inability to stop vomiting acid and bile, dehydration, high blood pressure, and dangerously low potassium. From living with this disease, I have gotten ulcers, Schatzkis ring, and Gastritis due to the constant vomiting. The worst part about living with this disease is that not many doctors are familiar with it so I am treated like a guinea pig and many doctors are surprisingly unwilling to learn more and find new treatments for it. I am currently drowning in medical debt because althought I have insurnace, each visit costs $150 out of pocket. I was also without insurance for a period of time when I was not working because of this disease. I am struggling to keep up with current bills coming in and the bills that I have been unable to pay off in the past. I do have FMLA at my current job but they do not pay sick time when I am sick or in the hospital, it is unpaid, and not by my choice. I am trying so very hard to catch up but it seems never ending. I work full time and I also go to school full time, I am hoping to become an RN in Pediatrics. Living with this disease and trying to keep up with daily living expenses, student expenses, normal bills on top of my medical bills has been extrenely challenging to say the least. If you are able to help me out in any way, even a dollar, I would appreciate it more than you know and I would be forever grateful.
*If you would like more information on Cyclic Vomiting Syndrome please visit their website: http://cvsaonline.org/ *
