Lead NYMag Story!! Please share.

Read it here. The PANS article that came out today in New York Magazine is the hardest I have ever worked and the proudest I have ever been about writing. It is not perfect (as much as I want it to be) but I have pored over every sentence, trying to figure out how to 1. Interest readers 2. Inform so that people will recognize PANS symptoms when they appear and 3. Shift medical care for those impacted.

When I asked “Rose” (as she is called in the feature) if I could write about her, she said yes — she wanted me to. When I told her she might save lives, she beamed. The gap between what can be done for those with PANS and what is often done is vast, and in that chasm, people die. Rose gives her story as an offering: to use the details to demonstrate the stakes.

If you or someone you love has been impacted by PANS, PANDAS, or other autoimmune/autoinflammatory illness, I hope this article feels like solidarity. You are doing something very, very hard. I am sending all my love to you as you navigate the byzantine, expensive, humiliating, and insufficient journey to treatment. It’s a nightmare. I am sorry for what you are enduring.

If you are a medical practitioner who, despite obstacles and disdain, continues to give everything you have to these kids, thank you. And if you are one of the parents and advocates, using your time and energy to reduce suffering, I am honored to be in your ranks.

I did my first interview for the article eight months ago. I ended up doing 55 of them. If I interviewed you and your story or your name is not inside, I’m sorry — and I’m sorry I couldn’t cover every trigger, treatment, and course of this illness. This piece has gone through dozens of iterations and details have come in and out, as the narrative demanded. But every conversation, grand rounds, and medical journal article informed my writing. I was transformed through this process. I am humbled by the parents, patients, and doctors who have spent their time teaching me.

It was writing this article that convinced me to make St. Vitus Dance, our audio documentary. I gave all I had to this article, and now it’s time to use audio to reach even more people. Helena and I are hard at work on the podcast and we are working with incredible partners. I can’t wait to share more soon.

If you are interested in talking more about contributing to PANS advocacy, or staying up-to-date on my work, you can reach me here. And if you are able to, please share.