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?
Enter the PANS Registry.
This is an international effort to collect data from PANS patients and families about their course of illness, potential triggers, treatments, and recoveries. Researchers can then aggregate all of this data to look for trends and potentially find a cure.
That’s right—YOU can help find a cure for this devastating condition by participating.
The more people fill out the registry, the more likely the results are to be valid. One of the main reasons so many studies on PANS to date are discounted by mainstream doctors is that they claim the sample sizes are too small.
If you are not scientifically inclined, think of it this way… If you grab three people off the street and ask if they had coffee this morning, you might randomly get three people who say no. If you take that small sample size as representative of the public, you would conclude that no one in the world drank coffee today. But in reality, you just happened to find the three people in your neighborhood who don’t like coffee.
Thus, critics of PANS believe that existing studies have had what we call selection bias: the people studied happened to be people who responded to the given treatments. These skeptics argue that one or two hundred people is not enough to draw conclusions about what treatments are or aren’t effective.
If you haven’t lived this condition firsthand but understand how science works, then you can almost understand why these doctors suggest we stick to cognitive-behavioral therapy and SSRI’s for the OCD symptoms—these have been used and studied in people with OCD for decades, with large sample sizes and replicable results. If you’re a typical doctor, you think you’d be irresponsible to suggest your patient try treatments that “don’t have enough evidence.”
Why the Registry Can Fix This
Imagine if we get 10,000 people in this registry who all show similar trends. Imagine you finally can see 7,000 people who got remission from IVIG, Rituxan, or plasmapheresis—those same treatments that most doctors currently consider too risky to prescribe. And for all of those people, you can then see trends that accurately predict who will respond or not. The more data you collect, the harder it becomes to deny the evidence.
But there’s a wrench in the plan, and I need your help get it out:
Not enough people have participated in the registry so far. We only have about 750 people participating right now. We need at least 1000, preferably by March 15th, in order to make it into the first papers presented at the upcoming conference in May.
When it comes to statistics, the larger the sample, the more accurate the results. So stop what you’re doing right now and go sign up:
If you’ve ever been frustrated by the lack of providers willing to help or the lack of insurance coverage, this is how you can fight back. This is how we will win. This is how we can finally stop being told PANS/PANDAS is rare, controversial, and poorly understood.
Participating may be the most important thing you can do right now.
If you don’t have an official diagnosis, we still need you to participate, too. There aren’t enough doctors to go around to diagnose this, so they’ve opened the registry to everyone who has symptoms. Researchers will be able to screen for officially diagnosed or not if they wish. Every entry will help.
All information is secure and anonymized—your name and email aren’t tied to your data when analyzed.
It will take some time to fill out all of the surveys, but you don’t have to do it all in one sitting. You don’t even have to fill out all of the surveys if you don’t have the information. There are places where you can say you don’t know. They don’t want you to make any guesses if you can help it. Just put in what you know.
They also need your siblings to participate as controls if they don’t have PANS. This will help parse out potential genetic and environmental factors. And if your siblings have or might have PANS, try to get them to enroll as a case, too. Just make sure you enroll them at the beginning of the study!
For more information and answers to common questions about the registry, go to this link and scroll down to the bottom, where you can find a FAQ: https://www.neuroimmune.org/pans-research/
If you are like me and want the myth of PANS being rare and pediatric to die, then I want you to join the registry. How can we advocate for this not being rare if we can’t even get 1000 people to participate?
So go help out me and every family who has ever faced this if you can today. Let’s demolish all the myths. Let’s get the data to push for insurance coverage. Let’s enable the research that will make more doctors listen. Let’s save lives and find a cure.
PANS is not rare, it is only rarely diagnosed. But let’s make it so that we will no longer feel the need to participate in Rare Disease Day by helping a proper diagnosis and treatment become the standard of care.
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3 thoughts on “Rare Disease Day 2021: What You Can Do to Demolish the Myth That PANS Is Rare”
I long suspected that I had come down with PANDAS at age 31 following a horrible strep throat case that I left untreated for a week until the agony of swallowing anything was unbearable. I went to my doctor terribly ill with fever, muscle aches and extreme weakness and the worst sore throat of my life. I was also freezing cold in 65 degree, noon sunshine. I had the heater in my car on full blast and was still cold. Anyway, my rapid strep throat was positive. I was put on antibiotics and made a swift recovery in less than a week. So all was fine right….WRONG!! 3-4 months later my life was flipped upside down with horrible tic disorders and OCD rituals involving all sorts of strange movements i.e. calf muscle flexing accompanied with odd vocalities like grunting and chuckling a specifically ‘perfect’ way and with any joy or happiness I felt, I had to laugh and end it on the ‘perfect’ note. The worst and most torturous thing was having to perform all of these a certain way until it felt ‘just right’ and oh my, the demand that this force has on me is so strong, I’ve been stuck hundreds, if not thousands of times crying, sobbing because I couldn’t get it to feel ‘just right.’ Out of nowhere I had become a slave to my own mind. Three years later… I was officially diagnosed with auto-immune encephalitis and more specifically, PANDAS. I have ADULT ONSET PANDAS. So yes, ADULTS CAN and DO get this abomination of a disease not just children!! I will be signing up on the registry for sure!
Excellent! I’ve signed all three of my kids up (who are now 18 years old). Is P/P even on the rare disease list? Last time I looked, awhile ago, it wasn’t there.
Great to hear! Thanks for participating. I don’t think that P/P is on the list, but I too often see it referred to as “rare” whenever it’s in the media. And doctors still think of it as such. So I like to remind everyone on Rare Disease Day that it’s just rarely diagnosed!