Yes, Adults Get PANS/PANDAS, Too: 3 Steps to More Effective Advocacy for ALL Patients

A couple of weeks ago was PANDAS/PANS Awareness Day, and I admit I’m disappointed in a lot of people and organizations right now. Yes, I’m proud of the fundraising that happened and glad people are raising awareness of PANS in children. But why, in their advocacy, are so many still ignoring that teens and adults get PANS? Some of you really need to remove “children with PANS” from your lexicon. It’s just “people with PANS,” or “PANS patients,” or “children and adults with PANS.”

The diagnostic criteria for PANS don’t exclude adults. The diagnostic criteria for PANDAS technically requires childhood onset, but case reports of PANDAS in adults abound. There are millions of adults with PANS/PANDAS, most of whom aren’t yet diagnosed. PANS and PANDAS don’t magically disappear on someone’s eighteenth birthday. It’s time to stop acting and talking like they do.

Knock it off already. I’m begging you.

I’m extra salty right now because I spent Awareness Day with an infection that’s reacquainting me with the many challenges of being an adult with PANS. I’m getting dangerously close to my thirties. Meanwhile, I sat there, ticking, and watching people within the PANS community behaving as if adults like me don’t exist, or like our challenges aren’t deserving of attention, too.

I live with significant physical damage and psychological trauma from years of untreated brain inflammation. With my current flare, there isn’t a single major life activity that isn’t significantly impacted by PANS. Do you really believe adults with PANS like me don’t deserve the same awareness and support as every child with PANS?

If you think it’s time to advocate for all PANS patients, read on for 3 steps your organization can take to be more effective...

How we talk about PANDAS/PANS matters.

This isn’t about using inclusive language for the sake of inclusiveness. It’s life and death for all the children who grew up to be adults with PANS and now can’t find help anywhere because advocates and organizations continue to call it a pediatric disease. It’s life and death for the adults who didn’t get PANS until their twenties and thirties (or beyond), and no doctor takes them seriously because of their lack of pediatric onset.

I would like to think that most of the people using “children with PANS” aren’t being intentionally exclusive––they are simply ignorant or didn’t think it through. Many people don’t realize how many adults get PANS, or even that adult PANDAS/PANS exists. Why? Because organizations and advocates fail to acknowledge it enough. Still, even if there are no bad intentions with such age-exclusive talk, it doesn’t change the harm that this phrasing does. It’s time to do better.

Unfortunately, there are some who insist on excluding adults on purpose. Such people forget that all pediatric diseases are severely underfunded.

Prioritizing children in PANS/PANDAS advocacy means neither children nor adults get the attention and funding they need.

Most of you who follow my blog are incredible advocates. You are raising awareness on PANS in all ages and helping change the narrative on who gets PANS. Your efforts are truly making a difference, and you give me a lot of hope.

But for those talking to their legislature about mandating insurance coverage or setting up PANS clinics, I’m so sick of mainly seeing “children with PANS” in the discourse. What do you think will happen when your child with PANS becomes an adult with PANS? Where will they get help if they relapse when they’re twenty, and it’s not required for insurance to cover treatment? Do better in your advocacy, both for the sake of adults and for the sake of the children.

As I said in a previous post about why ignoring adults with PANS is also bad for children:

It is misguided if people are focusing their awareness efforts on kids with PANS in the hopes of sparking sympathy to gain more funding. If other pediatric diseases with well-established mechanisms that clearly aren’t anyone’s fault can’t generate enough funding, then we can’t possibly expect a condition that others perceive as a parenting problem to do any better.

If you want funding for PANS, you must raise the stakes for not funding it. You must shine a light on the millions of [adults] in the world who are losing their entire lives to PANS and can’t contribute their gifts to society.  You must show that it could be anyone—whether a child, teen, or adult—who could find their whole world turned upside down by PANS someday.

From “Why Ignoring Adults with PANS Hurts Everybody”

Fortunately, some organizations are doing it right.

I wrote this post for people who aren’t properly advocating for all PANS patients. Now I want to take a moment to highlight a few organizations who are doing a great job at this: Neuroimmune Foundation, ASPIRE, and The Alex Manfull Fund. (There are other organizations also being inclusive, but these three have stood out to me.)

Neuroimmune Foundation is educating doctors about PANS, including PANS in adults. Ultimately, it’s educating doctors and other providers that will make the biggest strides in terms of the ability to get treatment for PANS, no matter the age. There was a push this year to raise money for Neuroimmune, and fortunately, even if people only talked about children in their fundraisers, the CME education Neuroimmune provides will benefit patients of all ages.

ASPIRE has also been inclusive since the beginning. Right on their home page you see, “children and adults affected by PANS/PANDAS.” They offer support groups that explicitly include adults with PANS, which is a rarity.

The Alex Manfull Fund gets its namesake from a young adult who lost her life to PANDAS because she didn’t get a prompt diagnosis and adequate treatment in time. In the Fund’s own words, “The Alex Manfull Fund supports awareness, education, and research to further understand the incidence, etiology, and best treatment of post-infectious neuroimmune disorders (aka PANDAS, PANS, and Autoimmune Encephalitis) with an emphasis on their manifestation in Adolescents and Young Adults…”

I have to wonder how many adults with PANS would still be alive if there wasn’t such a pervasive insistence on PANS being pediatric. Tragically, Alex isn’t the only person who has lost their life to this disease. PANS isn’t a benign pediatric disorder. PANS can be life-threatening at any age due to the food restriction, impulsivity, and suicidal thoughts it generates.

If we want doctors to be willing to treat people with PANS of all ages, we need more advocates and organizations to step up and do better.

Here are 3 steps you can take to promote PANS awareness for all patients…

1) As I’ve said, stop saying “children with PANS.”

Period. Make sure any legislation you’re pushing, as well as your organization’s websites, social media posts, handouts, and surveys always use language that isn’t age dependent. Good alternatives are “PANS patients,” “people with PANS,” and “children and adults with PANS.” Pro tip: use the Find and Replace functionality to quickly update the wording in documents.

2) Include PANS patients by default.

All too often, I see materials (such as surveys) that, if they even ask for patient input at all, make it clear that our involvement is an afterthought. This is completely backwards. The people directly afflicted with PANS should be invited by default. You should also assume that participating patients will be of many ages, into their 20s, 30s, and beyond. When (not if!) you invite patients to participate, don’t put an age cap on it.

I’ve heard from other adults with PANS that, when they tried to go to PANS support groups, they were turned away for not being a parent. This should never happen. Patients should never be excluded from anything. As we say in the greater Disability community, “Nothing about us without us.” Not only do adult patients miss out on much-needed support when excluded, the parents miss out on the wealth of knowledge we offer since we’re old enough to articulate our experiences.

The experts on living with PANS will always be the patients. Everyone benefits when you create a patient-centric organization.

3) Share perspectives from people with PANS, not just parents.

My personal opinion is that much of the misconception that PANS is a parenting problem stems from advocacy not including people with PANS. If outsiders never see patient perspectives, they may question if PANS isn’t just something overly concerned parents make up. People with PANS should be regularly given a platform and invited to share their input.

When I first started blogging in 2014, there seemed to be no one else discussing PANS from a first-person perspective. Now, there are many voices sharing their stories either on websites like Neuroimmune and ASPIRE, or via social media. There’s really no excuse anymore–seek out our content and intentionally involve child, teen, and adult patients who are willing to share.

Including perspectives from patients is especially important in legislative efforts. Don’t make patient voices an afterthought in advocacy. Legislators need to see that PANS is a problem that will continue into adulthood without prompt, adequate treatment.

Do adults get PANS and PANDAS? Yes, and it's time to talk about it. Image is artwork of an adult with head in hands.
Do adults get PANS and PANDAS? Yes, and it’s time more advocates and organizations acknowledge it intentionally.

Both kids and adults get PANS. We all deserve awareness.

Yes, there’s been improvement in the awareness of adult PANS/PANDAS in the last few years. However, there’s still a very long way to go. I believe that if advocates and organizations follow my 3 Steps, we can get to a place where every PANS patient, no matter their age, has prompt access to accurate diagnosis and adequate treatment.

If you’re guilty of only talking about kids with PANS, now that you know better, you can do better. Now go forth, and make sure you and your local PANS/PANDAS organization are advocating for patients of all ages.

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