rare diseases and other pleasant things (whiny post)

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http://www.rarediseases.org/search/rdbd ... 20Syndrome

This is my bizarre curse, my body's unjustified act against me, my rare disease.

With autism, I can say '1 in 150!'. Everybody knows somebody who knows somebody with autism. How many people do you know with Cyclic Vomiting Syndrome? I thought so.

The only thing less fun than the aloneness that a rare disease brings is the disease itself. Stress is bringing my CVS back after a three-year hiatus courtesy of Nexium. The delightful symptoms include three-week periods of perfect health followed by a day in a semiconscious state vomiting up to a gallon of bile, blood, and God only knows what else. If the new episodes turn out to be worse than my childhood ones, I face the possibility of death from dehydration or a heart attack during an episode. The chronic health effects of CVS are the same as those of bulimia nervosa: ulcers, tooth decay, weakening of the heart, etc. In addition, CVS comes courtesy of the mitochondrial DNA, which the mother always passes in its entirety to her offspring; I mean that ALL of my children, without exception, regardless of who I breed with, will have this disorder. Hooray!

Stupid mitochondrial DNA. I guess getting the OCD gene and the boil, carbuncle, and abcess gene from my father was not enough. Nature had to draw my mom into it.

Oh, that sounds like an awful (and yucky) disease. I hate vomitting. Even a queasy feeling knocks me down several pegs on the quality-of-life scale.

What's been so stressful in your life that brought it back?

Miss Pickwickian,

Good to see you back and feeling better. To complain is feeling better.

Another with no known cause, now I know of someone with CVS.

Life is the leading cause of death, I try not to get involved in the details.

Perhaps if you lived in the mountains and herded goats?

That sounds horrible and extremely trying, MissPickwickian. I feel for you. I suffer from a disease that comes and goes, also. I just had about four months when I started to think that maybe it was going away. And now, it has me beat again. Feels like I'm under house arrest, when it hits hard, LOL.

PickWick, I have never heard of CVC. Sounds awful. Sounds like you really need medical attention. I'd be very surprised if there isn't one pharmaceutical in the whole catalogue that can alleviate your symptoms. Better living with chemistry. Believe me, I know what I'm talking about!

I feel for you. I know what it's like to almost constantly feel like vomiting, only I never vomit; which makes the feeling worse. I'd blame it more on the thoughts circling in my head rather than a medical condition.

I wish I could, but my childhood attacks came every three weeks no matter how I felt (case and point: had attacks in the summer and, one year, on Christmas day). It was difficult to diagnose because doctors hate to diagnose freaky, rare, poorly understood ailments. Everybody wanted to say it was acid reflux. They had to put me under and stick a little camera down my throat one time.

CVS is probably neurological. Most researchers think it's a type of migraine; most people with CVS have migraines or have a mother who does (I am in the second group).