Meet Carrie, 22 Years Old (Connor’s Sister)
Since the age of four, Carrie has vomited four to seven mornings of the week, every week of her life. The vomiting lasts a few minutes to hours or even days. At times, her parents would walk in her room and she would be holding her stomach writhing in pain. In addition to her unbearable nausea and vomiting episodes, Carrie has experienced migraines, seizures, fatigue, heat intolerance and asthma.
Countless pediatricians, neurologists, and gastro-intestinal physicians over the years evaluated Carrie, but none were able to explain why this was happening to her. Carrie and her parents were told that she could be suffering from an array of disorders. She was diagnosed with a seizure disorder by a neurologist at the age of eight. However, this did not explain her nausea/abdominal pain and vomiting episodes. Over the years, Carrie has been prescribed antacids, antihistamines, antibiotics, steroids, nasal sprays, anti-convulsants, and anti-emetics strong enough for chemotherapy patients, all without relief. Several physicians told Carrie and her parents that her symptoms may be the result of anxiety, acid reflux, or even severe post-nasal drip and that she would eventually “grow out of it.” She did not.
As Carrie grew older, not only did this monster rear its ugly head in the morning, it also started attacking without warning. There have been times when friends have questioned Carrie why she was not sleeping over like everyone else, and other awkward moments over the years. Carrie has served as a leader throughout her school career and for many years she participated on school as well as club volleyball teams. This has not always been easy. At times, during conditioning for her volleyball team, Carrie would have to run off course, discreetly vomit, and quickly run to catch up with her teammates. She took all this in stride, even when a couple of coaches made inappropriate comments to her teammates— one even implying that she most likely had an eating disorder. It is especially difficult for a teenager to have a disease in which he/she looks perfectly normal, but is truly very ill.
Finally, Carrie was referred to the correct physician. In May of 2007, when she was 16 years old, Dr. Richard Boles informed Carrie that she was suffering from Cyclic Vomiting Syndrome (CVS), a result of Mitochondrial Disease, and that it was genetic. Even more remarkably, he told Carrie that she was not alone. This served as a huge turning point in her life. Since starting the proper treatment, Carrie’s symptoms are improving each day. She has been prescribed the correct medications, and under Dr. Boles’ care, her vomiting episodes have decreased considerably.
Although Carrie’s CVS episodes are often debilitating and have forced her to miss out on certain activities, Carrie has continually pushed through, and has refused to let her condition get the best of her. Although it remains somewhat difficult for Carrie to readily share her disease with some because of the skepticism she received during high school, Carrie has maintained a cheerful, outgoing, and diligent attitude and continues to strive to educate others about CVS and Mitochondrial Disease.
Carrie is currently a senior literary journalism major at The University of California, Irvine and will be graduating early. She has interned for Levine Communication Offices, Patch.com, ABC7 Eyewitness News, and most recently, Ryan Seacrest Productions. Carrie has hosted and participated in fundraising events for Mitochondrial Disease awareness and serves as co-chair of the CureMito! Facebook page. Carrie has never chosen to be a victim of her disease, even before it had a name; but now that it does, she has chosen to be part of the cure.