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Living with Tourette's syndrome

Started by Casey Wood39 · · 👁 4 views · 8 replies

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Participants Casey Wood39Angela WrightJustin Brown76hiddensailor14
Casey Wood39 Casey Wood39 NewcomerOP
3 messages
joined Dec 2010
#1 ·
I’m honestly wondering if there’s anyone out there in America living with Tourette's syndrome who might be open to chatting? I have a son dealing with this incredibly rare and complicated condition, and it feels like we're navigating a maze without a map. I've actually been thinking about starting a support group or a non-profit organization since it seems like there isn't one here, and frankly, it's frustrating. It feels like nobody can give me a straight answer or any real information, let alone help me understand the sheer uphill battle people face with this diagnosis. If anyone has some helpful insight or just wants to reach out, I would truly appreciate it!
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#2 ·
Casey Wood39 said:I’m honestly looking to see if there is anyone in America living with Tourette's syndrome whom I could talk to this way, since I have a son dealing with this rare and complicated condition. I'm actually thinking about starting an association for people with this disorder because it seems like there isn't one here. No one can give me any real information, let alone explain the struggles those living with it face. I would be grateful for any helpful info out there!

Tourette's isn't some "disease" you catch; it's a hereditary neurological disorder, and I think it's vital to keep emphasizing that to fight the social stigma, even while we work on rehabilitation for those affected.
If you've got the energy and the drive to start an organization, I say go for it. To get the ball rolling, you'll need to find at least three other people to join the cause. Since I'm currently working with a few other members on setting up an association, I can definitely help you out with the technical side of things.
Casey Wood39 Casey Wood39 NewcomerOP
3 messages
joined Dec 2010
#3 ·
Whether you call it a disorder or a disease doesn't really matter when the doctors themselves can barely manage to land on a correct diagnosis. I only know what I know about Tourette's through real-world experience, not some textbook. I’d really appreciate it if you could point me in the right direction regarding what it actually takes to start a non-profit—like, who do I even reach out to? I know you need at least three members to get things moving, but does it have to be exclusively people living with the condition?
Justin Brown76 Justin Brown76 Newcomer
2 messages
joined Dec 2010
#4 ·
I honestly think it would be such a game-changer if this organization actually got off the ground. I have someone incredibly close to me dealing with this disorder, and I just want to be able to help them—but I feel like I’m totally flying blind right now... plus, just being able to connect with other people who are walking the same path? That would mean the world.🙂
Justin Brown76 Justin Brown76 Newcomer
2 messages
joined Dec 2010
#5 ·
Everything I know about Tourette's comes from real-world experience, not from reading some textbook...

I’ve actually dealt with something pretty similar myself with someone incredibly close to me. I was just thinking the other day—maybe starting an association would be a good move? It would be so helpful to just sit down and chat with people who are actually going through the same stuff...
I'm all for this idea.
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#6 ·
Casey Wood39 said:Whether you call it a disorder or a disease—honestly, the terminology doesn't matter much when doctors themselves struggle to pin down an accurate diagnosis. I know from firsthand experience that people dealing with this face massive hurdles. Everything I know about Tourette's comes from real-world practice, not some textbook. I’d really appreciate it if you could advise me on the exact steps needed to start an association and who specifically I should contact. I know you need at least three members, but does it have to be exclusively people living with the condition?

There is actually a significant distinction between a "disorder" and a "disease," and that’s a nuance that should always be highlighted. It’s the people directly impacted by the diagnosis who need to lead the charge in educating the public and, quite often, the medical community itself.
In the States, the National Organization for Rare Disorders can also help advocate for rights and lobby on behalf of people living with Tourette's.
To start a non-profit organization, you need at least three people; it doesn't matter whether they have a formal diagnosis or not, as long as they share the same vision and goals.
You can find everything regarding the formation of a non-profit here:
On our organization's website, you can find our bylaws and use them as a template to draft your own. That’s exactly how we handled it.
Once you have your own organization established, you can join the National Organization for Rare Disorders, which serves as an umbrella federation for all groups representing the rights of those with rare diseases or disorders. For instance, my cancer advocacy group is part of that federation specifically because we represent patients with rare tumors. Working through a national federation makes it much easier to fight for rights and dismantle discriminatory policies, because those issues often affect everyone with a rare diagnosis. Frequently, once a single precedent is set and one group secures a specific right, other organizations can more easily achieve similar results. A federation creates a critical mass that politicians and bureaucrats simply cannot afford to ignore.

I definitely encourage you two to connect, get to know each other, and launch this together. The "Good Morning America" group was actually born out of similar connections and shared goals found on forums just like this one.
Good luck, and stay brave in fighting for your rights! You can do this!
hiddensailor14 hiddensailor14 Active Member
150 messages
joined Apr 2024
#7 ·
Angela Wright said:There’s actually a massive distinction between a disorder and a disease, and I think it’s something that should always be clearly emphasized. Honestly, the people who are on the front lines dealing with a diagnosis directly should be the ones leading the charge in educating the public—and quite often, even the medical staff itself.
In the States, you have the National Organization for Rare Disorders, which also works to advocate for rights and lobby on behalf of people living with Tourette's.
To start an association, you really just need at least three people. It doesn't matter if they carry a diagnosis themselves or not; what matters is that they share the same vision and values.
Everything regarding how to set up an organization can be found here:
On our organization's website, you can find our bylaws and try drafting your own based on them. That’s exactly how we handled it.
Once you eventually establish your own group, you can join the National Organization for Rare Disorders, which serves as an umbrella federation for all the various groups representing the rights of patients with rare diseases or disorders. For instance, my cancer advocacy group is part of that federation specifically because we represent those with rare tumors.

I really want to encourage you two to connect, get to know one another, and perhaps form an association together. Even the "Good Morning America" group was born out of similar connections and shared perspectives from this very forum.
Good luck, and stay brave in fighting for your rights. You can do this!

Could you please walk me through how you see the difference between a "disorder" and a disease in a practical sense? I know that back when I was at NORD, I was practically lynched because I referred to Down syndrome as a disease, and apparently, that isn't how it's supposed to be phrased🤔😕 so I assume the explanation would be similar for Down.
Are all diseases considered disorders, or just some of them? And vice versa—are all disorders diseases, or is it just a subset? Or perhaps there is no connection between the two terms at all.😕
It would be incredibly helpful if you could clarify things by providing a few examples of both "disorders" and diseases.
Thanks.🙂
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#8 ·
hiddensailor14 said:Can you please walk me through how you distinguish between a "disorder" and an actual disease in a practical sense? I’m asking because I practically got lynched by the folks over at NORD just for referring to Down syndrome as a disease—apparently, that's a huge no-no and technically isn't considered one.🤔😕 I assume the explanation will be just as similar when it comes to Down syndrome.
Are all illnesses considered disorders, or just some of them? And conversely, are all disorders actually illnesses, or is that only true for certain cases? Or am I overthinking it—do "illness" and "disorder" even have anything to do with one another?😕
It would actually be pretty helpful if you could lay out a few of those specific disorders and illnesses; it would give me a much clearer picture of what we’re actually dealing with here.
Thanks.🙂

Genetic conditions aren't exactly "illnesses" in the traditional sense; they’re more like fundamental coding errors. Take Down syndrome, for example—it’s just what happens when an extra chromosome gets bundled into the mix during cell division. You're looking at a structural defect that occurs right at the developmental level. It isn't something you can go in and "fix" later because the blueprint itself is different. It’s not a disease; it's simply how the biological foundation was laid down.
Take PTSD, for example. It’s a disorder triggered by extreme stress, something that can be managed through targeted psychotherapy to eventually bring a person back to a balanced state of mind. But here’s the kicker: with these kinds of conditions, there is no clear explanation as to why one person walks away from a traumatic event unscathed while another develops a debilitating disorder from the exact same situation.
It’s a straight line from one disorder to another. Take PTSD, for example—you see this pattern where people dealing with that kind of trauma end up facing cancer diagnoses down the road. It isn't some random coincidence; it’s likely because they’re still carrying that intense, crushing stress inside them, reliving the psychological trauma long after the actual event has passed. Stress doesn't just disappear; it stays in the system and wreaks havoc.
Kids living with Prater Will syndrome face some pretty brutal uphill battles—take their lack of appetite control, for instance. Because they don't really feel that "I'm full" signal from their bodies, they end up overeating uncontrollably, which acts like a fast track toward serious health crises like diabetes or cardiovascular disease.
Most illnesses are things you can actually tackle head-on—you throw medication at them, tweak your lifestyle, and aim for a cure or at least some real management. But when you’re dealing with disorders or syndromes, the playbook changes entirely. You aren't really "treating" the condition so much as you're trying to rehabilitate the person to function within the reality of their situation. It's less about fixing the problem and more about adaptation, especially since most of these conditions are irreversible.
It’s also worth noting that various illnesses can leave behind permanent damage, even after the initial condition is fully cured. Think about how polio used to be—people could beat the virus itself, yet they were often left with lifelong physical impairments, like struggling with mobility or dealing with legs that just never regained full function.
I don't know how much more clearly I can put this, but these are the nuances we have to be aware of. We’re talking about real people whose lives depend on these distinctions, yet politicians are all too happy to manipulate those very details just to serve their own agendas.
Casey Wood39 Casey Wood39 NewcomerOP
3 messages
joined Dec 2010
#9 ·
Big thanks to Jane for the solid advice. I’m really hoping to see more people jump in and back my idea for starting this association. Seriously, if you’re living with Tourette, or if you’re a friend or family member navigating this alongside them, don't hold back—there's absolutely no shame in joining this conversation. If you want to get involved, shoot me an email at: lcizic@hotmail.com. Let's band together and help people find ways to live better lives despite all the hurdles they face.

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