Thread by @FndPortal

It’s World FND month!

We’re also about to experience a global pandemic unprecedented in our lifetimes!

So why should you care about Functional Neurological Disorder?

👇👀

This thread isn’t meant to take away from the current focus on COVID-19. It’s an extremely dangerous development and it’s of course right that we take it seriously and prioritize it as we’re doing. 👍

But if you have room for something that looks grim at first but turns out to be an opportunity for positive change...

You might want to check this out.

So FND is a neurological disorder.

It’s actually likely the most common neurological condition next to headache.

Symptoms can be severe and life-altering. It affects people all over the world.

People experience seizures, tremors, weakness, pain, and lose the ability to speak.

The fact that you probably haven’t heard of FND is the second point: it’s MASSIVELY under-researched, under-diagnosed, and under-treated!

It’s very easy to dismiss something you don’t understand, and that’s part of what happened historically with FND. More on that in a minute.

The good news is that today, brain science is finally catching up to the sophisticated behavior of FND, shedding light on questions that have been open for centuries.

Importantly, FND is also often treatable in ways other neuro disorders aren’t. So with a ton of people having FND and almost no treatment currently available in most countries, there are HUGE potential gains to be made.

There are social benefits too: having uncontrolled neurological illness is damn expensive, for the state and the person who has it. It also results in untold suffering that we can do something about.

But there are other reasons too. This isn’t just an illness story.

There is a social history of FND, and it affects you whether you know it or not. FND used to be called “hysteria”, and is often thought to be not real or something only s U p E r W e I r D craaaaazy women get.

This stereotype is both stigmatizing (to all women and to people experiencing mental illness) and wrong.

People of all sexes and genders get FND. A history of mental illness is a risk factor, but not everyone has it.

That history matters for FND, but for everyone else too. If you’re a woman who has ever had her pain dismissed by doctors as imaginary or “just stress”, you’re part of this story! (sorry)

But we’re coming now to a more holistic view of the brain, and a deeper understanding of how things like pain, stress, mental illness and attention interact. And pulling illness apart from it’s gendered stereotypes too.

If you’d like a more detailed look at the biology of FND, and whether it’s really a “psychological” or “neurological” problem, there’s a thread on that here:

https://twitter.com/fndportal/status/1213560112264228872?s=21

And that’s part of what’s promising about new FND research, actually: it’s making it a bit easier to do the hard work of disentangling this disorder from its inherited stereotypes and stigma and figure out what’s really going on.

#spoonie
#raredisease
#fndaware

In other words, it’s a chance to tackle sexism, stigma about mental health, and stereotypes about who gets mysterious symptoms all at once.

But back to the science stuff for a second.

The benefits of FND research don’t stop at the borders of the diagnosis. That is, they don’t only benefit people with FND.

Many many people suffer from conditions that appear to be the result of related brain processes - migraine, fibromyalgia, CRPS, PTSD, and Parkinson’s to name a few.

FND isn’t any of those things, but it shares some common aspects with each of them - whether that’s obvious from the symptoms or not.

So getting at the difficult, baffling problems of FND doesn’t just advance FND knowledge. It ripples out into these other areas, each affecting more and more people, many of whom have been similarly stigmatized or abandoned.

And that’s not the end of it. FND is a disorder of consciousness, and what you might call an “embodied” brain disorder. It exists at the crossroads of where your mental life meets your physical world.

When you tell your arm to move, how does it move? How does the brain translate your intention into the mechanics of reality?

The more we learn about FND, the more we know about those kinds of questions, and vice versa.

I think there’s also a good case to be made that FND has a lot to teach us about the high-level systems of the brain that create consciousness, that let us see color and have emotions and pay attention and feel pain, and really experience anything.

Which means FND might not just teach us about how we move (how the mental becomes the physical) but also how our brains interpret and structure our subjective reality (how the physical world becomes mental.)

🤯🤯🤯

So to finish up:

Why should you care about FND? Because we can

1. Relieve massive widespread suffering
2. Right a few long-standing social ills
3. Maybe unlock extremely cool secrets of the brain

but most importantly, because:

4. People all around you have FND. You already care about us: we’re your friends and co-workers and neighbors and loved ones. And we need your help.

You can learn about FND from the great community here, at patient orgs like @FNDHope @FNDHopeUK @FNDAction @fndfriends @FNDDimensions @FriendsInNead

as well as from the community of experts we retweet regularly.

If you want a quick guide to explain FND to loved ones, try

rarediseases.org/rare-diseases/…

A great place to start your journey as a patient is @jonstoneneuro’s site neurosymptoms.org

and anyone can help at any time by sharing (with permission of course) the stories and perspectives of people with FND.

Let’s make it a World FND Month to remember! 🥳