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.