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
How PANS Really Feels
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
On this Rare Disease day, for the 1000th time, let me clear something up and then show you how to fix it:
PANS/PANDAS is not rare, and it’s not only kids that have it. So please, stop referring to it as a “rare pediatric disorder.”
Current estimates say that PANS/PANDAS affects 1 in 200 kids. And since nothing magical happens when a person turns eighteen, you can be sure there are thousands and thousands of adults walking around who grew up and never got treated.
I have been advocating for awareness for nearly seven years, ever since I was diagnosed at age nineteen. We have seen much progress in research, but when I can still go to a doctor and hear “rare” and “pediatric,” it feels like I’ve been screaming into a void for all this time. And I realize that I am only one of thousands of advocates who probably feel the same. So if we haven’t been able to achieve major reforms in the treatment of this disorder so far, what are we missing?
Continue reading “Rare Disease Day 2021: What You Can Do to Demolish the Myth That PANS Is Rare”