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.