Acoustic Neuroma Awareness Week

For the past 8 years, I have “celebrated” this week, part of “Go Grey in May” Brain tumor month, by reminding myself (and you, as my trusty reader) that I had an Acoustic Neuroma.

I know you are sick of hearing that. But hopefully you have been entertained by the videos I’ve made every year. At least, they’re supposed to be entertaining…

I’ve made a video of some sort every year, and this year is no different. And yet, it’s completely different. I get to share someone else’s story with you.

Last month I met Carole through the ANA forum. I thought her story was interesting not only because of how long ago she had been diagnosed (53 years) but also because of how they diagnosed it.

Carole was diagnosed as a teenager. In the ’60s. (I’m not giving the exact year to protect her privacy.) Now for those paying attention, ANA is only 40 years old this year.

Do the math.

ANA wasn’t around for her in the ’60s. There was nowhere to get information, other than what she received from her medical providers. No internet. No National Association. Even the International AN medical conferences didn’t start until 2011. No outreach. No community.

Until we video chatted late last month, Carole had not spoken with another person who had an AN since she was a teenager. She didn’t know there were other people like her.

In the 12 years I have been involved with ANA, I have met literally HUNDREDS of people like me.

The ANA has been around for 40 years, and now that I have completed my board tenure, I promise to still care and share about the AN community, committing to making sure that information and support is easily available.

In the meantime, enjoy Carole’s story!

(if you have a story to tell, let me help you.)

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