GRIN Stats: The Many Symptoms of CMT

Discover the complexities of Charcot-Marie-Tooth disease (CMT) and transform your understanding of this multifaceted condition. Join us on CMT Simplified as we uncover insights from the Global Registry for Inherited Neuropathies (GRIN) about the physical symptoms like foot drop and balance issues, as well as the emotional and social challenges faced by those living with CMT. We'll explore the emotional hurdles such as depression and anxiety that many grapple with, along with the diverse mobility aids that empower individuals with CMT to maintain their independence.

We emphasize the importance of a holistic approach in managing CMT, addressing both physical and emotional needs. Hear about the exciting 2025 CMT Summit in Nashville, offering workshops on adaptive fashion, nutrition, and mental health, as well as a groundbreaking study using Biosensics wearables to improve mobility data collection. With resources like the Hereditary Neuropathy Foundation's symptom checklist, the discussion highlights the empowering role of community support in enhancing the lives of those affected by CMT. Join us for an episode filled with hope, solidarity, and practical strategies for navigating life with CMT.

Join GRIN Today!

Download the CMT Symptoms Checklist

Register for the 2025 CMT Summit in Nashville on 4/24-26

Thanks for listening! Learn more at hnf-cure.org and subscribe for more updates on CMT research and advancements.

Transcript

Intro 0:00

Welcome to CMT Simplified, brought to you by the Hereditary Neuropathy Foundation. This podcast delivers bite-sized updates on the latest research and advancements in Charcot-Marie-Tooth disease, CMT. With episodes ranging from 10 to 20 minutes, we cut through the jargon to bring you clear, concise insights into breakthroughs, treatments and scientific discoveries shaping the future of CMT. Perfect for busy listeners. Cmt Simplified is your on-the-go resource for understanding complex information in a straightforward and approachable way. Stay informed, empowered and up-to-date. One short episode at a time.

Sharko 0:41

You know, today we are talking all about something that's really important to us and that is Charcot-Marie-Tooth disease, or CMT, and we have some amazing information from GRIN, you know.

Marie 0:54

GRIN.

Sharko 0:55

GRIN, just like a smile GRIN.

Marie 0:58

Yeah, it's pronounced just like GRIN.

Sharko 0:59

And it's the Global Registry for Inherited Neuropathies.

Marie 1:01

That's right.

Sharko 1:03

It's a network of over 5,400 CMT patients.

Marie 1:07

Wow.

Sharko 1:08

From over 70 countries, all coming together to you know, help, research and improve lives for folks with CMT.

Marie 1:16

And what I think is so cool about GRIN is that you know it's not like some big research project that's coming. You know, top down it's completely patient driven.

Sharko 1:24

That's amazing.

Marie 1:25

Yeah, so all the data that's coming into GRIN is coming directly from the people who know CMT best, and that's the people who are living with it every day.

Sharko 1:32

It's like this like massive worldwide support group. That's also like a scientific powerhouse.

Marie 1:37

Exactly. And that direct connection to the patient's experiences is what makes GRIN so powerful, because it's not just numbers on a spreadsheet, you know. It's real insights into the actual daily challenges and triumphs of people who are navigating life with CMT.

Sharko 1:52

That must impact daily life in so many ways.

Marie 1:55

Absolutely, and think about things like walking down a set of stairs just maintaining balance. Grin tells us that 55% of people experience balance problems. Okay, 53% deal with ankle weakness. Right, grin tells us that 55% of people experience balance problems. 53% deal with ankle weakness.

Sharko 2:08

I mean, you know, it's not even just the physical symptoms. Like you know, fatigue is a major factor For 48% of those in grin. That persistent tiredness, I mean it, can really wear you down.

Marie 2:21

It really can, and unfortunately it goes hand in hand with pain.

Intro 2:24

Okay.

Marie 2:25

A whopping 74 to 78% of people with CMT experience some form of pain, whether it's in their legs, feet, back or hands.

Sharko 2:33

That's a lot. I mean, that's a huge percentage of people. Yeah, it's really eye-opening to see just how prevalent pain is for those with CMT. And then there's hand muscle weakness as well, which affects 43% of people, especially younger individuals.

Intro 2:46

Yeah.

Sharko 2:46

So imagine trying to like button your shirt or, you know, write a note.

Marie 2:51

Right.

Sharko 2:51

And struggling because your hands just don't cooperate the way that you want them to.

Marie 2:54

Absolutely.

Sharko 2:55

So you know, we often hear about those kind of more well-known symptoms, yeah, but what about some of the less talked about symptoms? Yeah, what does Grin reveal about those? A number of people report experiencing things like depression anxiety even like social awkwardness or, you know, digestive issues.

Marie 3:12

These are all very real challenges faced by many in the CMT community.

Intro 3:16

Yeah.

Marie 3:16

And it's so important to acknowledge them. You know the data tells us that 27% of people in GRIN report experiencing depression and 33% report anxiety.

Intro 3:26

That's significant.

Marie 3:27

These are significant numbers and it highlights the importance of providing support and resources that address the whole person, not just their physical symptom.

Sharko 3:35

You know, hearing these numbers and realizing just how many others are going through similar challenges has to be so validating. Oh, absolutely For those listening who might be feeling isolated or alone.

Marie 3:45

Yeah, it's a powerful reminder that you're part of a much larger community than you might realize.

Sharko 3:50

Now let's shift gears a bit and talk about getting around. How does CMT affect mobility and independence?

Marie 3:55

Right.

Sharko 3:55

And what does GRIN tell us about how people adapt?

Marie 3:59

Well, it's fascinating to see the range of experiences reflected in the data. About 25% of people with CMT don't use any mobility aids at all.

Sharko 4:09

That's encouraging to hear.

Marie 4:10

It is. But on the other hand, 23% rely on AFOs or ankle foot orthotics to help with walking and 12% use either orthotics or a cane. So there's definitely a spectrum of needs.

Sharko 4:23

So no one size fits all approach when it comes to managing CMT. Each there's definitely a spectrum of needs, so no one-size-fits-all approach when it comes to managing CMT.

Marie 4:27

Each person's journey is unique. Some need more support than others, and that's perfectly okay.

Sharko 4:32

Right.

Marie 4:32

GRIN shows us that 9% of people use a wheelchair and 6% use a walker.

Sharko 4:37

And that's really helpful information for listeners to know, I think it normalizes that some people with CMT. It's this valuable insight into all these diverse ways that people with CMT navigate the world and maintain their independence.

Marie 4:58

Absolutely it's really incredible.

Sharko 5:00

It is the power of this data.

Marie 5:02

It is, and it's important to remember that Grand Rupp is more than just a collection of statistics.

Intro 5:06

Yeah.

Marie 5:07

It's a powerful tool.

Sharko 5:08

Yeah.

Marie 5:09

That's helping to drive research.

Sharko 5:11

Oh, absolutely.

Marie 5:12

And improve the lives of people with CMT.

Sharko 5:14

You know, I was just thinking about that, like the power of this data.

Marie 5:17

Yeah.

Sharko 5:17

You know, by sharing their experiences, people with CMT are actually contributing.

Marie 5:22

Exactly.

Sharko 5:23

To you know a better understanding of the condition.

Marie 5:26

Yes.

Sharko 5:27

And potentially, you know, leading to new treatments down the road.

Marie 5:29

Exactly, and the more people who participate in GRIN, the more comprehensive and valuable that data becomes.

Sharko 5:37

It's really amazing.

Marie 5:38

It helps researchers identify trends, explore potential genetic links Right and design more targeted clinical trials.

Sharko 5:44

So you know, if you are listening to this and you haven't already joined GRIN, we strongly encourage you to do so. It's joingrinorg.

Marie 5:51

Yes. J-o-i-n-g-r I NGR n dot o RG that's right your participation really can make a difference and even if you've already joined, remember to keep your profile updated, oh that's a good point things change over time right new research questions arise. Yeah, staying engaged with grin yeah ensures that your experiences continue to contribute to advancements in CMT research.

Sharko 6:14

Now, before we move on, I want to touch on something that might surprise some listeners. We've talked about the physical and the emotional impacts of CMT, but GRIN also reveals that even breathing can be affected.

Marie 6:25

That's right.

Sharko 6:26

Really Not always something people think about, but 18% of GRIN participants have been diagnosed with respiratory dysfunction.

Marie 6:35

So for some, cmt can even affect their ability to breathe easily. Yes, and it can range from mild shortness of breath to more significant difficulties. It's another reminder that CMT can impact different parts of the body in ways you might not expect.

Sharko 6:51

And speaking of things you might not expect, I was surprised to learn about the prevalence of spinal deformities.

Marie 6:57

Yes.

Sharko 6:57

Among people with CMT.

Marie 6:58

Indeed, scoliosis and kyphosis, the crutches of the spine, can develop as a result of muscle imbalances, okay Caused by CMT.

Sharko 7:07

So it's not just the arms and legs that are affected.

Marie 7:10

Not necessarily. Cmt can impact the entire musculoskeletal system.

Sharko 7:15

Wow.

Marie 7:15

Grand data highlights the importance of looking at the whole picture when it comes to CMT, addressing not only the neurological aspects but also potential orthopedic and respiratory complications.

Sharko 7:27

So it really emphasizes the need for a comprehensive and holistic approach.

Marie 7:32

Absolutely To managing CMT. And this brings us back to the emotional and social aspects we discussed earlier. Remember, 27% of those in Grin reported experiencing depression and 33% noted anxiety.

Sharko 7:44

Yeah, it's crucial to remember that CMT is not just a physical condition. You can take a toll on mental health and social well-being, absolutely.

Marie 7:52

And those feelings can be compounded by the social awkwardness or isolation that many people with CMT report, 27% of Grin participants noted experiencing this.

Sharko 8:04

You know it makes sense when you think about it. Cmt can affect balance, coordination, even speech, which makes social interaction feel more challenging or uncomfortable.

Marie 8:14

And then there's the fatigue, the pain, the constant awareness of one's physical limitations. All of these can contribute to a sense of wanting to withdraw from social situations.

Sharko 8:27

It's a reminder that, you know, living with a chronic condition like CMT can be, you know, emotionally and socially taxing, and that having support systems in place is so important.

Marie 8:36

Exactly Connecting with others who understand, whether it's through support groups, online communities or events like the CMT Summit, can make a world of difference.

Sharko 8:44

Speaking of the CMT Summit, that actually brings us to another great opportunity, you know, for those wanting to connect with others and learn more about living well with CMT, wanting to connect with others and learn more about living well with CMT.

Marie 8:55

Absolutely. The 2025 CMT Summit is coming up April 24th through the 26th in Nashville, Tennessee.

Sharko 9:00

Oh nice.

Marie 9:01

It's going to be an amazing event that combines a clinical trial readiness summit with a health and wellness retreat. So it's not just for researchers and clinicians Not at all. This is a chance for anyone affected by CMT to come together, learn from leading experts, participate in cutting-edge research and connect with others who truly understand what it's like to live with this condition.

Sharko 9:22

You know I love that they've combined the clinical trial aspect with a focus on health and wellness.

Marie 9:27

Yes.

Sharko 9:28

It really speaks to that holistic approach we were just talking about.

Marie 9:30

Exactly. You'll have the opportunity to explore solutions tailored to your specific needs, whether it's adaptive mobility aids, pain management techniques or mental health resources.

Sharko 9:41

And I heard they have some really interesting workshops and panels as well.

Marie 9:44

They do. They'll be covering everything from adaptive fashion to nutrition, mental health and pain management.

Sharko 9:49

Wow, and you know if you're interested in getting involved in research, the Biosensics wearable study will be taking place at the summit.

Marie 9:58

So that's, interesting.

Sharko 9:58

They'll be using wearable technology to collect real-world mobility data.

Marie 10:03

Very cool.

Sharko 10:04

It's pretty cool to see how technology is being used to advance our understanding of CMT.

Marie 10:09

It's pretty cool to see how technology is being used to advance our understanding of CMT. It's a fantastic example of how patient participation can directly contribute to progress in the field.

Sharko 10:16

Absolutely, and for those wanting to maybe explore different mobility options, there's a mobility and AFO demo session Right when you can try out different types of AFOs crutches, canes, wheelchairs, scooters, you name it.

Marie 10:31

Awesome.

Sharko 10:31

Sounds like there's something for everyone at this summit.

Marie 10:33

There really is. It's an opportunity to be a part of the progress, to connect with others who understand your journey and to feel the power of a community united in the pursuit of a brighter future for everyone. With CMT.

Sharko 10:44

You know, and for those listening who may not be able to attend the summit, I want to mention another valuable resource from the Hereditary Neuropathy Foundation, or HNF.

Intro 10:52

OK.

Sharko 10:53

They've created a Charcot-Marie-Tooth disease symptom checklist that you can use to track your symptoms and discuss your health and treatment plan with your doctor.

Marie 11:02

That's great. We'll be sure to include a link in the show notes where you can download the checklist. It's a fantastic tool for empowering yourself and taking an active role in managing your CMT.

Sharko 11:12

Absolutely.

Marie 11:13

It's a way to organize your experience and have more productive conversations with your healthcare provider.

Sharko 11:18

Well, as we wrap up this deep dive into the world of CMT, I think the biggest takeaway here is that you are not alone.

Marie 11:25

You're not.

Sharko 11:26

The data from GRIN paints such a powerful picture of the shared experiences within the CMT community.

Marie 11:33

Absolutely.

Sharko 11:34

The challenges, the triumphs and everything in between.

Marie 11:36

Yeah.

Sharko 11:36

It's a reminder that thousands of others understand what you're going through.

Marie 11:41

And by connecting with others, sharing your story, participating in research and advocating for your own health, you can contribute to a brighter future for yourself and for everyone affected by CMT.

Sharko 11:51

And don't forget to check out joingrinorg if you're interested in contributing to this valuable research.

Marie 11:56

Yes, and visit cntsummitorg to learn more about the 2025 CMT Summit in Nashville.

Sharko 12:02

Thanks for joining us in this deep dive. Until next time, keep exploring, keep learning and keep connecting.

Intro 12:09

Thank you for listening to CMT Simplified. To learn more about HNF and 2025 Summit, visit hnf-cureorg. Join CMT families around the world, creating impact that matters.