This page has made living with this disease much easier for me and my son who has had CVS 4 years. He was diagnosed a year after he started having symptoms.
He’s 17, and his episodes have been much lighter after we have received advice about supplements and medication. He never throws up anymore, and the frequency of episodes is halved. It’s easier to ask doctors about medication when you bring documentation on it to the doctor’s office.
It’s also easier for neighbors and friends to believe that the disease is in fact real, when you can name other people with the same disease, and it has a website. To be thought lazy is an unwelcome burden on top of the illness.
I’m forever grateful.
– Evelyn Vartdal Skurtveit