Posted in Family Life, Rare Disease

Living Without A Label

It’s been ages since I posted, mostly because I’m a slightly ambivalent blogger (does anyone really want to know more about my life?). However, I’m motivated to post today because of the comments I’ve had about this article I wrote for The Mighty.

It’s #autoinflammatory awareness month, when we try to raise the profile of this group of rare diseases, and I decided going public about my experience as the parent of a child with an unspecified periodic fever syndrome would be my contribution to the cause. So many people and parents have already said how much this piece echoes their own experiences; it’s wonderful to feel connected with other people going through similar situations.

I thought sharing it here might open it up to other parents who are in similar situations–there are more of us hiding in plain sight than I ever imagined. If you want to learn more about autoinflammatory syndromes, or would like to donate to the organization that advocates for us, please visit

Also, isn’t the cover art at the top gorgeous?? It’s not mine, obviously–the artist is named at the end of the article: Thinkstock image by amoklv. I kind of want a print to put up in our house.



Texan, teacher, writer, reader: that’s me in a nutshell. Originally from Texas, I now live in London with my husband (he’s a Brit) and our two boys. I spend my time devouring books (especially young adult/middle grade fiction), baking cookies and generally going in ten directions at once. More than a decade ago, I moved to London for a teaching job, met my husband, stayed, and started a family. The last few years have been a whirlwind: in 2013, we moved to Austin, TX and I decided to stay at home with our son; in 2014, we bought and renovated a house in South Austin; in 2015, we welcomed our second son at a local birth center...and in 2016, we packed up and moved back to London! 2017 is set to see more changes as our eldest little starts school and I head back to the classroom. Read on for renovation info, book reviews, creative writing posts, and the general flotsam and jetsam of my life.

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