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 http://saidsupport.org.

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.

Advertisements

Author:

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.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s