Wednesday, May 8, 2013

Back to School

Unfortunately, last night bore little resemblance to the Rodney Dangerfield movie. But it was still quite fun.

Mom, Dad and I, and one of my uncles, his wife and one of my cousins went to an advanced class at NIH to talk about genetic testing.

The first counselor we saw at NIH teaches a class to geneticists, PhDs and medical doctors, and he asked us to come talk to the class.

Mom and I talk about Friedreich's ataxia a lot, so what she said was not a surprise. But hearing Dad, my uncle and cousin talk was interesting. The students asked good questions, too.

Here is what I said about testing;

I know some people with genetic diseases find testing offensive, not me. My sister and husband got tested before having kids, but I did not see that as saying my life is not worth living. They are both planners who would be sad without their spreadsheets. They wanted to know what they'd be getting into.

I don't know what they would have done if they were both carriers. But, as I told the class, I would not wish FA on my worst enemy, so how could I be OK with potentially having a nephew or niece with it? So of course, if they decided to adopt, that would make sense.

It was not easy to say all that I said, or hear what others said. My uncle said he felt guilty being a carrier? How about the person who brought this deadly disease to light in our family?

Granted, neither of us had anything to do with our genes -- no choice there -- but still.

I think Claren realized how hard it was for me. Right after I said how hard FA is, she got up off the floor and just sat next to me, making sure I knew she was there. She is the best!

My aunt and uncle both said how good I was afterward, and the counselor said, if we could only clone your attitude ... So bitter works!

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