The story of Michele
My 28 year old son was first diagnosed with this rare affliction about 7 years ago. The name, and the acronym, is a bit unfortunate- everyone thinks you’re talking about the store. At first when a 21 year old start vomiting violently in the morning, you think was he drinking?! But then it is every morning, and he is screaming in pain. He becomes dehydrated and exhausted and weak. We take him to the ER and of course the nurses and doctors are highly skeptical. After several stints at the ED and inpatient admits, he was diagnosed with this rare disease that was first diagnosed in children but now is also recognized in adults. My son is a very intelligent, college grad but instead of being well on his way in a career of his choice, he must take part time or low paying jobs because it must allow him to be out for a week or two at a time dealing with this syndrome. Yes, that’s right, it comes in cycles, about 4 times a year and can last from one to three weeks. He can’t really plan for anything, like a vacation, and he gets very nervous traveling too far from home, always afraid of an episode. He can’t have an apartment with his friends, because he never knows how long an employer will keep him. You would think this type of disease would be easier to treat or cure, consisting of prolonged and severe nausea and pain, or at least the medical community would have a protocol that has an impact on the episodes, but unfortunately the treatment of hydrating, and administering medication like a cocktail of morphine, ativan, zofran, and other pain, anti-anxiety and nausea medication only treats the symptoms. There is really nothing that limits or stops the episodes. So these adults are living in limbo. The emotional and financial cost is huge. I hope the day comes soon when there is at least some type of therapeutic remedy for ‘CVS’, so that these adults, as well as the children, can lead the lives they all deserve.