Tomorrow, October 9th, is PANDAS Awareness Day.
Each year, it seems like parents lead the conversation. Some of this is because many who live with PANS are too young or too incapacitated to do it themselves. And I am so grateful for parents’ incredible efforts in raising awareness for this devastating illness––please keep it up. However, in order to be most effective, the conversation on awareness needs to center on what it’s like for the patients who actually live with the condition. We, the patients, are the ones who need the cures, so our voices should be amplified when possible.
I encourage all of you to not only post stories from parents’ perspectives tomorrow, but to also share stories from people who have lived with this condition themselves. I have compiled a list of what I think are my best advocacy essays and top posts on what PANS/PANDAS is a like, a guest post by another adult with PANS, and the Neuroimmune Foundation’s collection of patient stories. Please consider sharing at least one of these on your social media:
Why Ignoring Adults with PANS Hurts Everybody
Dear Sick, Scared 2015 Me: A Letter to Someone Whose Illness Uprooted Their Life
Why PANS/PANDAS Awareness Matters: An Open Letter to Legislators
Why Autoimmune Encephalitis Doctors Need to Stop Ignoring PANS
These 3 Myths About PANS Are Ruining Lives
Why PANS Awareness Saves Lives
Why Therapy Isn’t Enough When You Have OCD and PANS/PANDAS
I Woke Up in a Body I Didn’t Recognize: Living with Involuntary Movements
Special Guest Interview with Author and PANS Survivor Madeline Dyer
Neuroimmune Foundation Blog: In Our Own Words
Additional Info on PANS/PANDAS
ASPIRE: What Are PANS & PANDAS?
ASPIRE: Diagnosing PANS & PANDAS (Scroll down for suggested labs)
Neuroimmune Foundation: Resources to Share with Your Doctor
The Dreaming Panda Blog: Resources, Support Groups, and Organizations
- Facebook: The Dreaming Panda Blog
- Twitter: @dreamingpanda1