I happen to have a rare, chronic disease, called Cyclic Vomiting Syndrome (CVS). The name itself is terrible enough, but the effects that come along with the syndrome are even worse. It’s something that I’ve had all my life, but not to the extreme of which it has shown itself the past 8 years.
Those who have CVS, a majority that are children, will feel nauseas, get sick, and then are unable to stop. Our bodies then run a cycle of getting sick continually until the episode has run it’s course, and then we are well again. We will sometimes get sick multiple times an hour, lasting days, and often weeks, until then slowly we start feeling better again. The next part of the cycle is to then go through a recovery period, after having lost weight and nutrients to our body that are important for us to live. Then we go through a period where we are fine, and then the symptoms start coming on (hiccups, nausea, dizziness, headaches, sensitivity to light, irregular bowels and sleeping) and the cycle will start over again.
If you’re familiar with migraines at all, then you’ll know something about CVS. We have the same symptoms and the doctors are unable to detect, like in head migraines, why stomach migraines occur exactly. To get through, we do a lot of the same types of things for relief: make the room dark, low sound, take hot baths, sleep. It’s very difficult to keep anything down, even water, so much of the time is spent trying to rest between the sickness. Almost every time I have an episode, I have to be admitted to the hospital to be rehydrated. The longer that I can wait until the end of my spell, the greater the chance of it knocking the episode altogether. Sometimes I’m left with no choice, though.
I struggled not knowing what was wrong for three years before going to the Mayo Clinic in 2014 (pictured at 90 pounds above with friends I made while at Mayo and my husband Jason). The story of that struggle leading up to the diagnosis is one in and of itself, but this is a recovery story. After being diagnosed, I was assigned a specialist from KU and was administered medicine. For the first time I felt like I had been given something that had made a difference. I celebrated a year episode free last year on July 26th and was prepared to do the same this year for two years when I got sick again, on July 23rd. I thought I would never get sick again. Truth is, the doctors told me that I would. I just didn’t want to believe it.
CVS is very difficult to detect, for all tests that are done on the body show that everything is normal. There is a possible hormonal imbalance, that can be genetic (my father and cousin also has this disease), which makes finding a cure difficult. This is a disease that dates back to the 1800’s, and in some studies has been shown to affect one in every two thousand individuals. It’s been stated that there are probably more people who are affected by this disease, but it is often misdiagnosed.
I hope to work to find not only a cure but support for those who are living with this nightmare of a disease. Especially considering children are the ones affected the most.
