Empowering Patients Through Advocacy

In this conversation, Brandy Schantz and Natalie Hayden discuss their advocacy work with the Crohn's Colitis Foundation, sharing personal experiences and the importance of community support. They emphasize the significance of knowledge and education for patients with IBD, highlighting the ongoing research and resources available through the foundation. The discussion also touches on living with chronic illness, the empowerment that comes from understanding one's condition, and the need for support and camaraderie among patients.

Transcript

Brandy Schantz (00:01.42)
We had a little technical difficulty, but we're coming back. So we were just talking about advocacy work and how we both are very passionate about putting time into that, how healing it is both for yourself and what you're going through. And of course, making the world a better place for others, many of whom are far less fortunate. I'm on the board of the Local Crohn's Colitis Foundation and do a lot of work with them.

and you also work with the Crohn's Colitis Foundation and have our, you're going to our big conference next week. So tell me a little bit about your work with Crohn's Colitis Foundation and what's happening next week.

Natalie Hayden (00:34.318)
you.

Natalie Hayden (00:38.284)
Yes, I've been affiliated with the Crohn's and Cletus Foundation for a very long time, even before I came out and shared my story. I remember doing take-step walks back in 2010 with my college roommate who surprisingly was also diagnosed with IBD after college graduation. We lived all four years together. So that makes you wonder, doesn't it? We did take-step walks back then. And then before I really became an advocate here in St. Louis where I live, I did a couple of take-steps walks and was the honored hero one year.

Brandy Schantz (00:47.352)
You

Brandy Schantz (00:56.246)
Mm-hmm.

Natalie Hayden (01:06.826)
After I launched my blog, I got more affiliated locally with the Mid-America Chapter and had the opportunity to MC two of the Gaylas. And I've worked on the National Foundation work as well on different research projects and different articles about IBD pregnancy in particular. And something I'm really most excited about is that I was selected as one of the patient reporters for the Crohn's and Colitis Congress for 2025. So I'll be going to San Francisco and reporting live from the conference.

on many different sessions and I'm so excited to be there, get a pulse on that research and be able to share it in ways that are understandable to the patient and caregiver communities. And it's just so awesome to have that opportunity thanks to the foundation.

Brandy Schantz (01:49.196)
Foundation does such amazing things. I'm so fortunate. I feel so thankful to be involved with this group. know, my listeners know I had a very severe reaction to my humera that caused now some very lifelong health issues that, you know, just are gonna go along with my Crohn's disease, because that's just what life has handed me. And knowing that

the Crohn's colitis foundation is there. One of the many great things they're doing is there's now a study on the safety of these medications long-term because you you talked about taking 22, hey, well, Humira was a huge step forward. The newer medications we have are a huge step forward. I'm now on Stellara. But the fact of the matter is all of this is still new. This has all happened within a 20-year span, which sounds like a lot of time, but

just don't know what can happen after you've been on a med for 10, 15, 20 years necessarily, or what all of the reactions are. How can this affect you tomorrow, 10 years from now, 50 years from now? So every little thing this foundation does is so important from studying the health and safety of Crohn's patients on biologics during pregnancy.

Natalie Hayden (02:51.47)
Yeah.

Brandy Schantz (03:10.528)
to what are the effects of these drugs and what can these reactions look like so doctors can better identify them. It's really important. We're out there every day helping people and I cannot tell you how grateful I am that we have Crohn's Colitis Foundation and honestly, we have some of the best people working in that foundation. I'm truly in awe of how great everybody is and how much work gets done.

Natalie Hayden (03:39.182)
It's truly fantastic. Everybody really genuinely cares. Even if they don't have a family member or any connection to IBD, there's just such a sense of camaraderie amongst people in the foundation. And really, I hope that any patient or caregiver that is watching this does the work and just even goes to the website and sees all the incredible resources right at our fingertips.

Brandy Schantz (03:42.775)
Mm-hmm.

Brandy Schantz (03:49.26)
Yes.

Brandy Schantz (03:58.027)
Yes.

Yeah, because we've come so far and so much of that is thanks to the Crohn's Colitis Foundation. There's such great work being done and you can access so much great information that we didn't have even when I was diagnosed in 2013 because I've only been diagnosed, well guess it's been a little over 11 years now so it doesn't feel that way sometimes. It feels like either one year or 1100, one of the two. But there's just so much we can do.

Natalie Hayden (04:26.124)
Yes.

Brandy Schantz (04:29.206)
And there's so many ways people can help. Take steps teams this week. I'll be in a meeting next week with the rest of the folks that run this thing every year. It's so much fun. I mean, even if you just donate $20 and get out there and walk with friends and take some photos, it's something that contributes.

Natalie Hayden (04:48.942)
Exactly. It's so fun. I'll never forget my, youngest brother ran the team challenge Chicago marathon for me in 2016. And you know, it was so emotional. was pregnant with my oldest and to see my brother, you know, blood, sweat and tears training all those months leading up even crying while he's running the race and pain, um, all to make a statement and spread awareness about Crohn's and colitis. Um, it's something that I'll never forget in my life. And if you're a runner,

Brandy Schantz (04:55.736)
Hmm.

Brandy Schantz (05:06.52)
Mm-hmm.

Natalie Hayden (05:18.136)
participating in half marathons or full marathons for Team Challenge is just unbelievable.

Brandy Schantz (05:25.014)
Yeah, you know, the team spirit coming together, helping people that we all love. You know, because like we said, even if we've never met you, I love you, we're a family, you know, we're in this together. So I'm really looking forward to, yes, I'm really looking forward to your reporting. So tell me, how can everybody check out what's happening at the Crohn's Colitis Congress next week? How can we keep up with your reporting?

Natalie Hayden (05:49.326)
The best way to keep up with it is probably over Instagram. My handle is Natalieann, A-N-N Hayden, H-A-Y-D-E-N, and then the foundation will also be sharing everything that I'm sharing, and then we'll also be sharing it on Twitter slash X, whatever you'd like to call it. And then I'll probably also be keeping track of subject matters that I think are really going to be of interest to the community, and then doing my research and sharing articles on my blog lights, camera, crones. I think that's probably the best way to really

Brandy Schantz (06:10.552)
you

Natalie Hayden (06:18.094)
take the information, take some time to understand that research and the implications and what it means and how you can participate, and then share that through articles. I had the opportunity to attend the Advances in IBD conference in Orlando this past December, and I was a speaker on three different panels. And I took so many research and information that I gained from that conference and have been creating content since. I've learned so much. And when you are just in the room, hearing everything firsthand,

You also realize the exponential amazing amount of research that's going on, the work that's being done by the researchers and the GIs and just how tirelessly they are working to improve our patient experience. So you might feel sad or upset about where you are in your journey, but just know on a daily basis, so much work is being done in our honor to help benefit us, to drive that research, to make more medications.

Brandy Schantz (06:53.048)
Mm-hmm.

Brandy Schantz (07:04.888)
Mm-hmm.

Natalie Hayden (07:13.454)
to improve our quality of life, to get a better understanding of nutrition, all the things. It is going on on a daily basis. And as patients, we can speak up and voice where those gaps are and where we want more research. it's really a win-win to connect on social media, have your fingertips on that research so you can say, when I go to my next clinic visit, I'm going to ask about this. I'm going to talk to my doctor about these studies that are available and how I can participate. I want to know more about nutrition. There's so many different.

Brandy Schantz (07:25.836)
Yep.

Natalie Hayden (07:42.708)
nonprofits and amazing groups out there that you can connect with and really learn. And I think an empowered patient is an educated patient and you are going to feel so much stronger in your disease journey the more that you know. Knowledge really is power with IBD.

Brandy Schantz (07:50.838)
Mm-hmm.

Brandy Schantz (07:58.304)
It really is. It really is. Knowledge and knowing that you have a family out there, support. So even in the hardest of times, we're still there. We're still here.

Natalie Hayden (08:08.29)
We're not going anywhere.

Brandy Schantz (08:10.314)
Nope, nope, we all need help and it's important to speak out, speak up and reach out because that's how we all are going to survive. That's how we get through this together.

Natalie Hayden (08:22.124)
Yes, I mean, it's just even the simplest things like when you're driving to clinic and you know, maybe it's a 40 minute drive and it's traffic and you had to miss work or your children are with you in the backseat going to the doctor's appointment with you and you think, you know, why me? Why do I have to do this? Or you're getting labs every three months and everybody's sick around you and you're like, I don't want to be in this, you know, laboratory right now getting my blood drawn, but you need to. And there's those moments where you kind of have to pause for a second and just kind of come back to reality and understand.

Brandy Schantz (08:31.884)
Mm-hmm.

Brandy Schantz (08:43.394)
yes.

Natalie Hayden (08:50.83)
Yes, this is your normal. No, it's not everybody's normal, but you don't have to see your disease as something that's your identity. It's a part of you, but it's not all of you. used to, I often say, I used to see my IBD and my crowns as a scarlet letter when I was a young 20 something and I wasn't married and not a mom and trying to kind of hide it from everybody in my career. And now I see it more as something that I'm super proud of. You know, I think it makes you a bad ass to be honest that, you know,

Brandy Schantz (08:58.956)
Mm-hmm.

Brandy Schantz (09:04.759)
Yes.

Brandy Schantz (09:14.38)
Mm-hmm. Agreed.

Natalie Hayden (09:17.682)
I worked full-time non-stop until I had my kids. Now I do advocacy full-time. had three healthy kids. I do all the things like everybody else just with a chronic illness. So I think that you have to think of yourself as I'm a little bit extra in a good way. My disease doesn't have to rob me of everything. It can give me incredible perception. When it's sunny outside and I'm able to walk and I have the energy to do so or go for a run,

Brandy Schantz (09:29.184)
Absolutely.

Natalie Hayden (09:43.702)
or take my kids out on an adventure when I do have that energy and feel great, you pause for a moment and you thank God and you say, wow, I'm so grateful for my health today. When I was a healthy, invincible 20 year old, I never once thought, I'm so grateful for my health. You just take a step granted. You don't even think about it. It's just like you would just expect to feel well every day. And with all the sicknesses going around between like influenza and RSV and all these different sicknesses right now, it's terrible, especially in my kids' grades and everything.

Brandy Schantz (09:55.244)
Mm-hmm.

Brandy Schantz (09:59.009)
Nope.

Brandy Schantz (10:04.652)
Mm-hmm.

Natalie Hayden (10:12.62)
You just think, you know, everybody needs to remember they're going to hopefully get better from this in about three to five days. You know, this isn't something that's a lifelong illness. And for us, we don't know what the next day is going to bring. We don't know what dinner is going to bring. So, you know, we have to live in the moment and thrive in the moments that are positive and then recognize when we're in the low points, when we're in our darkest days, that the better days are going to come.

Brandy Schantz (10:19.436)
Mm-hmm.

Brandy Schantz (10:36.436)
Because we have a superpower. One of my big advocacy pushes is hire disabled, particularly invisible chronic illnesses, figure out ways to use accommodations creatively so that you can retain chronically ill employees, especially ones who've been newly diagnosed. And I always say, isn't that the kind of employee you want? Somebody who can wake up in the morning, have no idea what's about to get thrown at them.

Natalie Hayden (10:38.572)
We really do.

Brandy Schantz (11:06.7)
but know that they can twist, turn, duck, jump, do whatever it takes to accommodate that particular unknown today and make it work. Don't we all want that? Yeah.

Natalie Hayden (11:17.966)
couldn't say it better myself. That's so true. You know, it really is. And so many of us in the IBD community were type A personality. So you're just a real go gutters in this community. think every single person I've come across is exact personality. So.

Brandy Schantz (11:25.196)
Brandy Schantz (11:31.32)
Mm-hmm. We are type a plus all the way type a plus So, thank you so much for coming on. I'm so excited to hear you next week. I'm gonna be tuning in on Instagram I'm going to be sharing your posts. So anybody who's interested, you know, I've got these posts coming out and You know your blog lights camera crones. It's really amazing everybody get out there. Take a look

Natalie Hayden (11:34.222)
Yes.

Brandy Schantz (11:59.98)
because you're doing really great work out there, Natalie.

Natalie Hayden (12:02.318)
Thanks so much, Brandy, as are you.

Brandy Schantz (12:04.897)
Thank you so much. This was a Living Chronic.

Brandy Schantz (00:01.42)
We had a little technical difficulty, but we're coming back. So we were just talking about advocacy work and how we both are very passionate about putting time into that, how healing it is both for yourself and what you're going through. And of course, making the world a better place for others, many of whom are far less fortunate. I'm on the board of the Local Crohn's Colitis Foundation and do a lot of work with them.

and you also work with the Crohn's Colitis Foundation and have our, you're going to our big conference next week. So tell me a little bit about your work with Crohn's Colitis Foundation and what's happening next week.

Natalie Hayden (00:34.318)
you.

Natalie Hayden (00:38.284)
Yes, I've been affiliated with the Crohn's and Cletus Foundation for a very long time, even before I came out and shared my story. I remember doing take-step walks back in 2010 with my college roommate who surprisingly was also diagnosed with IBD after college graduation. We lived all four years together. So that makes you wonder, doesn't it? We did take-step walks back then. And then before I really became an advocate here in St. Louis where I live, I did a couple of take-steps walks and was the honored hero one year.

Brandy Schantz (00:47.352)
You

Brandy Schantz (00:56.246)
Mm-hmm.

Natalie Hayden (01:06.826)
After I launched my blog, I got more affiliated locally with the Mid-America Chapter and had the opportunity to MC two of the Gaylas. And I've worked on the National Foundation work as well on different research projects and different articles about IBD pregnancy in particular. And something I'm really most excited about is that I was selected as one of the patient reporters for the Crohn's and Colitis Congress for 2025. So I'll be going to San Francisco and reporting live from the conference.

on many different sessions and I'm so excited to be there, get a pulse on that research and be able to share it in ways that are understandable to the patient and caregiver communities. And it's just so awesome to have that opportunity thanks to the foundation.

Brandy Schantz (01:49.196)
Foundation does such amazing things. I'm so fortunate. I feel so thankful to be involved with this group. know, my listeners know I had a very severe reaction to my humera that caused now some very lifelong health issues that, you know, just are gonna go along with my Crohn's disease, because that's just what life has handed me. And knowing that

the Crohn's colitis foundation is there. One of the many great things they're doing is there's now a study on the safety of these medications long-term because you you talked about taking 22, hey, well, Humira was a huge step forward. The newer medications we have are a huge step forward. I'm now on Stellara. But the fact of the matter is all of this is still new. This has all happened within a 20-year span, which sounds like a lot of time, but

just don't know what can happen after you've been on a med for 10, 15, 20 years necessarily, or what all of the reactions are. How can this affect you tomorrow, 10 years from now, 50 years from now? So every little thing this foundation does is so important from studying the health and safety of Crohn's patients on biologics during pregnancy.

Natalie Hayden (02:51.47)
Yeah.

Brandy Schantz (03:10.528)
to what are the effects of these drugs and what can these reactions look like so doctors can better identify them. It's really important. We're out there every day helping people and I cannot tell you how grateful I am that we have Crohn's Colitis Foundation and honestly, we have some of the best people working in that foundation. I'm truly in awe of how great everybody is and how much work gets done.

Natalie Hayden (03:39.182)
It's truly fantastic. Everybody really genuinely cares. Even if they don't have a family member or any connection to IBD, there's just such a sense of camaraderie amongst people in the foundation. And really, I hope that any patient or caregiver that is watching this does the work and just even goes to the website and sees all the incredible resources right at our fingertips.

Brandy Schantz (03:42.775)
Mm-hmm.

Brandy Schantz (03:49.26)
Yes.

Brandy Schantz (03:58.027)
Yes.

Yeah, because we've come so far and so much of that is thanks to the Crohn's Colitis Foundation. There's such great work being done and you can access so much great information that we didn't have even when I was diagnosed in 2013 because I've only been diagnosed, well guess it's been a little over 11 years now so it doesn't feel that way sometimes. It feels like either one year or 1100, one of the two. But there's just so much we can do.

Natalie Hayden (04:26.124)
Yes.

Brandy Schantz (04:29.206)
And there's so many ways people can help. Take steps teams this week. I'll be in a meeting next week with the rest of the folks that run this thing every year. It's so much fun. I mean, even if you just donate $20 and get out there and walk with friends and take some photos, it's something that contributes.

Natalie Hayden (04:48.942)
Exactly. It's so fun. I'll never forget my, youngest brother ran the team challenge Chicago marathon for me in 2016. And you know, it was so emotional. was pregnant with my oldest and to see my brother, you know, blood, sweat and tears training all those months leading up even crying while he's running the race and pain, um, all to make a statement and spread awareness about Crohn's and colitis. Um, it's something that I'll never forget in my life. And if you're a runner,

Brandy Schantz (04:55.736)
Hmm.

Brandy Schantz (05:06.52)
Mm-hmm.

Natalie Hayden (05:18.136)
participating in half marathons or full marathons for Team Challenge is just unbelievable.

Brandy Schantz (05:25.014)
Yeah, you know, the team spirit coming together, helping people that we all love. You know, because like we said, even if we've never met you, I love you, we're a family, you know, we're in this together. So I'm really looking forward to, yes, I'm really looking forward to your reporting. So tell me, how can everybody check out what's happening at the Crohn's Colitis Congress next week? How can we keep up with your reporting?

Natalie Hayden (05:49.326)
The best way to keep up with it is probably over Instagram. My handle is Natalieann, A-N-N Hayden, H-A-Y-D-E-N, and then the foundation will also be sharing everything that I'm sharing, and then we'll also be sharing it on Twitter slash X, whatever you'd like to call it. And then I'll probably also be keeping track of subject matters that I think are really going to be of interest to the community, and then doing my research and sharing articles on my blog lights, camera, crones. I think that's probably the best way to really

Brandy Schantz (06:10.552)
you

Natalie Hayden (06:18.094)
take the information, take some time to understand that research and the implications and what it means and how you can participate, and then share that through articles. I had the opportunity to attend the Advances in IBD conference in Orlando this past December, and I was a speaker on three different panels. And I took so many research and information that I gained from that conference and have been creating content since. I've learned so much. And when you are just in the room, hearing everything firsthand,

You also realize the exponential amazing amount of research that's going on, the work that's being done by the researchers and the GIs and just how tirelessly they are working to improve our patient experience. So you might feel sad or upset about where you are in your journey, but just know on a daily basis, so much work is being done in our honor to help benefit us, to drive that research, to make more medications.

Brandy Schantz (06:53.048)
Mm-hmm.

Brandy Schantz (07:04.888)
Mm-hmm.

Natalie Hayden (07:13.454)
to improve our quality of life, to get a better understanding of nutrition, all the things. It is going on on a daily basis. And as patients, we can speak up and voice where those gaps are and where we want more research. it's really a win-win to connect on social media, have your fingertips on that research so you can say, when I go to my next clinic visit, I'm going to ask about this. I'm going to talk to my doctor about these studies that are available and how I can participate. I want to know more about nutrition. There's so many different.

Brandy Schantz (07:25.836)
Yep.

Natalie Hayden (07:42.708)
nonprofits and amazing groups out there that you can connect with and really learn. And I think an empowered patient is an educated patient and you are going to feel so much stronger in your disease journey the more that you know. Knowledge really is power with IBD.

Brandy Schantz (07:50.838)
Mm-hmm.

Brandy Schantz (07:58.304)
It really is. It really is. Knowledge and knowing that you have a family out there, support. So even in the hardest of times, we're still there. We're still here.

Natalie Hayden (08:08.29)
We're not going anywhere.

Brandy Schantz (08:10.314)
Nope, nope, we all need help and it's important to speak out, speak up and reach out because that's how we all are going to survive. That's how we get through this together.

Natalie Hayden (08:22.124)
Yes, I mean, it's just even the simplest things like when you're driving to clinic and you know, maybe it's a 40 minute drive and it's traffic and you had to miss work or your children are with you in the backseat going to the doctor's appointment with you and you think, you know, why me? Why do I have to do this? Or you're getting labs every three months and everybody's sick around you and you're like, I don't want to be in this, you know, laboratory right now getting my blood drawn, but you need to. And there's those moments where you kind of have to pause for a second and just kind of come back to reality and understand.

Brandy Schantz (08:31.884)
Mm-hmm.

Brandy Schantz (08:43.394)
yes.

Natalie Hayden (08:50.83)
Yes, this is your normal. No, it's not everybody's normal, but you don't have to see your disease as something that's your identity. It's a part of you, but it's not all of you. used to, I often say, I used to see my IBD and my crowns as a scarlet letter when I was a young 20 something and I wasn't married and not a mom and trying to kind of hide it from everybody in my career. And now I see it more as something that I'm super proud of. You know, I think it makes you a bad ass to be honest that, you know,

Brandy Schantz (08:58.956)
Mm-hmm.

Brandy Schantz (09:04.759)
Yes.

Brandy Schantz (09:14.38)
Mm-hmm. Agreed.

Natalie Hayden (09:17.682)
I worked full-time non-stop until I had my kids. Now I do advocacy full-time. had three healthy kids. I do all the things like everybody else just with a chronic illness. So I think that you have to think of yourself as I'm a little bit extra in a good way. My disease doesn't have to rob me of everything. It can give me incredible perception. When it's sunny outside and I'm able to walk and I have the energy to do so or go for a run,

Brandy Schantz (09:29.184)
Absolutely.

Natalie Hayden (09:43.702)
or take my kids out on an adventure when I do have that energy and feel great, you pause for a moment and you thank God and you say, wow, I'm so grateful for my health today. When I was a healthy, invincible 20 year old, I never once thought, I'm so grateful for my health. You just take a step granted. You don't even think about it. It's just like you would just expect to feel well every day. And with all the sicknesses going around between like influenza and RSV and all these different sicknesses right now, it's terrible, especially in my kids' grades and everything.

Brandy Schantz (09:55.244)
Mm-hmm.

Brandy Schantz (09:59.009)
Nope.

Brandy Schantz (10:04.652)
Mm-hmm.

Natalie Hayden (10:12.62)
You just think, you know, everybody needs to remember they're going to hopefully get better from this in about three to five days. You know, this isn't something that's a lifelong illness. And for us, we don't know what the next day is going to bring. We don't know what dinner is going to bring. So, you know, we have to live in the moment and thrive in the moments that are positive and then recognize when we're in the low points, when we're in our darkest days, that the better days are going to come.

Brandy Schantz (10:19.436)
Mm-hmm.

Brandy Schantz (10:36.436)
Because we have a superpower. One of my big advocacy pushes is hire disabled, particularly invisible chronic illnesses, figure out ways to use accommodations creatively so that you can retain chronically ill employees, especially ones who've been newly diagnosed. And I always say, isn't that the kind of employee you want? Somebody who can wake up in the morning, have no idea what's about to get thrown at them.

Natalie Hayden (10:38.572)
We really do.

Brandy Schantz (11:06.7)
but know that they can twist, turn, duck, jump, do whatever it takes to accommodate that particular unknown today and make it work. Don't we all want that? Yeah.

Natalie Hayden (11:17.966)
couldn't say it better myself. That's so true. You know, it really is. And so many of us in the IBD community were type A personality. So you're just a real go gutters in this community. think every single person I've come across is exact personality. So.

Brandy Schantz (11:25.196)
Brandy Schantz (11:31.32)
Mm-hmm. We are type a plus all the way type a plus So, thank you so much for coming on. I'm so excited to hear you next week. I'm gonna be tuning in on Instagram I'm going to be sharing your posts. So anybody who's interested, you know, I've got these posts coming out and You know your blog lights camera crones. It's really amazing everybody get out there. Take a look

Natalie Hayden (11:34.222)
Yes.

Brandy Schantz (11:59.98)
because you're doing really great work out there, Natalie.

Natalie Hayden (12:02.318)
Thanks so much, Brandy, as are you.

Brandy Schantz (12:04.897)
Thank you so much. This was a Living Chronic.

Brandy Schantz (00:01.42)
We had a little technical difficulty, but we're coming back. So we were just talking about advocacy work and how we both are very passionate about putting time into that, how healing it is both for yourself and what you're going through. And of course, making the world a better place for others, many of whom are far less fortunate. I'm on the board of the Local Crohn's Colitis Foundation and do a lot of work with them.

and you also work with the Crohn's Colitis Foundation and have our, you're going to our big conference next week. So tell me a little bit about your work with Crohn's Colitis Foundation and what's happening next week.

Natalie Hayden (00:34.318)
you.

Natalie Hayden (00:38.284)
Yes, I've been affiliated with the Crohn's and Cletus Foundation for a very long time, even before I came out and shared my story. I remember doing take-step walks back in 2010 with my college roommate who surprisingly was also diagnosed with IBD after college graduation. We lived all four years together. So that makes you wonder, doesn't it? We did take-step walks back then. And then before I really became an advocate here in St. Louis where I live, I did a couple of take-steps walks and was the honored hero one year.

Brandy Schantz (00:47.352)
You

Brandy Schantz (00:56.246)
Mm-hmm.

Natalie Hayden (01:06.826)
After I launched my blog, I got more affiliated locally with the Mid-America Chapter and had the opportunity to MC two of the Gaylas. And I've worked on the National Foundation work as well on different research projects and different articles about IBD pregnancy in particular. And something I'm really most excited about is that I was selected as one of the patient reporters for the Crohn's and Colitis Congress for 2025. So I'll be going to San Francisco and reporting live from the conference.

on many different sessions and I'm so excited to be there, get a pulse on that research and be able to share it in ways that are understandable to the patient and caregiver communities. And it's just so awesome to have that opportunity thanks to the foundation.

Brandy Schantz (01:49.196)
Foundation does such amazing things. I'm so fortunate. I feel so thankful to be involved with this group. know, my listeners know I had a very severe reaction to my humera that caused now some very lifelong health issues that, you know, just are gonna go along with my Crohn's disease, because that's just what life has handed me. And knowing that

the Crohn's colitis foundation is there. One of the many great things they're doing is there's now a study on the safety of these medications long-term because you you talked about taking 22, hey, well, Humira was a huge step forward. The newer medications we have are a huge step forward. I'm now on Stellara. But the fact of the matter is all of this is still new. This has all happened within a 20-year span, which sounds like a lot of time, but

just don't know what can happen after you've been on a med for 10, 15, 20 years necessarily, or what all of the reactions are. How can this affect you tomorrow, 10 years from now, 50 years from now? So every little thing this foundation does is so important from studying the health and safety of Crohn's patients on biologics during pregnancy.

Natalie Hayden (02:51.47)
Yeah.

Brandy Schantz (03:10.528)
to what are the effects of these drugs and what can these reactions look like so doctors can better identify them. It's really important. We're out there every day helping people and I cannot tell you how grateful I am that we have Crohn's Colitis Foundation and honestly, we have some of the best people working in that foundation. I'm truly in awe of how great everybody is and how much work gets done.

Natalie Hayden (03:39.182)
It's truly fantastic. Everybody really genuinely cares. Even if they don't have a family member or any connection to IBD, there's just such a sense of camaraderie amongst people in the foundation. And really, I hope that any patient or caregiver that is watching this does the work and just even goes to the website and sees all the incredible resources right at our fingertips.

Brandy Schantz (03:42.775)
Mm-hmm.

Brandy Schantz (03:49.26)
Yes.

Brandy Schantz (03:58.027)
Yes.

Yeah, because we've come so far and so much of that is thanks to the Crohn's Colitis Foundation. There's such great work being done and you can access so much great information that we didn't have even when I was diagnosed in 2013 because I've only been diagnosed, well guess it's been a little over 11 years now so it doesn't feel that way sometimes. It feels like either one year or 1100, one of the two. But there's just so much we can do.

Natalie Hayden (04:26.124)
Yes.

Brandy Schantz (04:29.206)
And there's so many ways people can help. Take steps teams this week. I'll be in a meeting next week with the rest of the folks that run this thing every year. It's so much fun. I mean, even if you just donate $20 and get out there and walk with friends and take some photos, it's something that contributes.

Natalie Hayden (04:48.942)
Exactly. It's so fun. I'll never forget my, youngest brother ran the team challenge Chicago marathon for me in 2016. And you know, it was so emotional. was pregnant with my oldest and to see my brother, you know, blood, sweat and tears training all those months leading up even crying while he's running the race and pain, um, all to make a statement and spread awareness about Crohn's and colitis. Um, it's something that I'll never forget in my life. And if you're a runner,

Brandy Schantz (04:55.736)
Hmm.

Brandy Schantz (05:06.52)
Mm-hmm.

Natalie Hayden (05:18.136)
participating in half marathons or full marathons for Team Challenge is just unbelievable.

Brandy Schantz (05:25.014)
Yeah, you know, the team spirit coming together, helping people that we all love. You know, because like we said, even if we've never met you, I love you, we're a family, you know, we're in this together. So I'm really looking forward to, yes, I'm really looking forward to your reporting. So tell me, how can everybody check out what's happening at the Crohn's Colitis Congress next week? How can we keep up with your reporting?

Natalie Hayden (05:49.326)
The best way to keep up with it is probably over Instagram. My handle is Natalieann, A-N-N Hayden, H-A-Y-D-E-N, and then the foundation will also be sharing everything that I'm sharing, and then we'll also be sharing it on Twitter slash X, whatever you'd like to call it. And then I'll probably also be keeping track of subject matters that I think are really going to be of interest to the community, and then doing my research and sharing articles on my blog lights, camera, crones. I think that's probably the best way to really

Brandy Schantz (06:10.552)
you

Natalie Hayden (06:18.094)
take the information, take some time to understand that research and the implications and what it means and how you can participate, and then share that through articles. I had the opportunity to attend the Advances in IBD conference in Orlando this past December, and I was a speaker on three different panels. And I took so many research and information that I gained from that conference and have been creating content since. I've learned so much. And when you are just in the room, hearing everything firsthand,

You also realize the exponential amazing amount of research that's going on, the work that's being done by the researchers and the GIs and just how tirelessly they are working to improve our patient experience. So you might feel sad or upset about where you are in your journey, but just know on a daily basis, so much work is being done in our honor to help benefit us, to drive that research, to make more medications.

Brandy Schantz (06:53.048)
Mm-hmm.

Brandy Schantz (07:04.888)
Mm-hmm.

Natalie Hayden (07:13.454)
to improve our quality of life, to get a better understanding of nutrition, all the things. It is going on on a daily basis. And as patients, we can speak up and voice where those gaps are and where we want more research. it's really a win-win to connect on social media, have your fingertips on that research so you can say, when I go to my next clinic visit, I'm going to ask about this. I'm going to talk to my doctor about these studies that are available and how I can participate. I want to know more about nutrition. There's so many different.

Brandy Schantz (07:25.836)
Yep.

Natalie Hayden (07:42.708)
nonprofits and amazing groups out there that you can connect with and really learn. And I think an empowered patient is an educated patient and you are going to feel so much stronger in your disease journey the more that you know. Knowledge really is power with IBD.

Brandy Schantz (07:50.838)
Mm-hmm.

Brandy Schantz (07:58.304)
It really is. It really is. Knowledge and knowing that you have a family out there, support. So even in the hardest of times, we're still there. We're still here.

Natalie Hayden (08:08.29)
We're not going anywhere.

Brandy Schantz (08:10.314)
Nope, nope, we all need help and it's important to speak out, speak up and reach out because that's how we all are going to survive. That's how we get through this together.

Natalie Hayden (08:22.124)
Yes, I mean, it's just even the simplest things like when you're driving to clinic and you know, maybe it's a 40 minute drive and it's traffic and you had to miss work or your children are with you in the backseat going to the doctor's appointment with you and you think, you know, why me? Why do I have to do this? Or you're getting labs every three months and everybody's sick around you and you're like, I don't want to be in this, you know, laboratory right now getting my blood drawn, but you need to. And there's those moments where you kind of have to pause for a second and just kind of come back to reality and understand.

Brandy Schantz (08:31.884)
Mm-hmm.

Brandy Schantz (08:43.394)
yes.

Natalie Hayden (08:50.83)
Yes, this is your normal. No, it's not everybody's normal, but you don't have to see your disease as something that's your identity. It's a part of you, but it's not all of you. used to, I often say, I used to see my IBD and my crowns as a scarlet letter when I was a young 20 something and I wasn't married and not a mom and trying to kind of hide it from everybody in my career. And now I see it more as something that I'm super proud of. You know, I think it makes you a bad ass to be honest that, you know,

Brandy Schantz (08:58.956)
Mm-hmm.

Brandy Schantz (09:04.759)
Yes.

Brandy Schantz (09:14.38)
Mm-hmm. Agreed.

Natalie Hayden (09:17.682)
I worked full-time non-stop until I had my kids. Now I do advocacy full-time. had three healthy kids. I do all the things like everybody else just with a chronic illness. So I think that you have to think of yourself as I'm a little bit extra in a good way. My disease doesn't have to rob me of everything. It can give me incredible perception. When it's sunny outside and I'm able to walk and I have the energy to do so or go for a run,

Brandy Schantz (09:29.184)
Absolutely.

Natalie Hayden (09:43.702)
or take my kids out on an adventure when I do have that energy and feel great, you pause for a moment and you thank God and you say, wow, I'm so grateful for my health today. When I was a healthy, invincible 20 year old, I never once thought, I'm so grateful for my health. You just take a step granted. You don't even think about it. It's just like you would just expect to feel well every day. And with all the sicknesses going around between like influenza and RSV and all these different sicknesses right now, it's terrible, especially in my kids' grades and everything.

Brandy Schantz (09:55.244)
Mm-hmm.

Brandy Schantz (09:59.009)
Nope.

Brandy Schantz (10:04.652)
Mm-hmm.

Natalie Hayden (10:12.62)
You just think, you know, everybody needs to remember they're going to hopefully get better from this in about three to five days. You know, this isn't something that's a lifelong illness. And for us, we don't know what the next day is going to bring. We don't know what dinner is going to bring. So, you know, we have to live in the moment and thrive in the moments that are positive and then recognize when we're in the low points, when we're in our darkest days, that the better days are going to come.

Brandy Schantz (10:19.436)
Mm-hmm.

Brandy Schantz (10:36.436)
Because we have a superpower. One of my big advocacy pushes is hire disabled, particularly invisible chronic illnesses, figure out ways to use accommodations creatively so that you can retain chronically ill employees, especially ones who've been newly diagnosed. And I always say, isn't that the kind of employee you want? Somebody who can wake up in the morning, have no idea what's about to get thrown at them.

Natalie Hayden (10:38.572)
We really do.

Brandy Schantz (11:06.7)
but know that they can twist, turn, duck, jump, do whatever it takes to accommodate that particular unknown today and make it work. Don't we all want that? Yeah.

Natalie Hayden (11:17.966)
couldn't say it better myself. That's so true. You know, it really is. And so many of us in the IBD community were type A personality. So you're just a real go gutters in this community. think every single person I've come across is exact personality. So.

Brandy Schantz (11:25.196)
Brandy Schantz (11:31.32)
Mm-hmm. We are type a plus all the way type a plus So, thank you so much for coming on. I'm so excited to hear you next week. I'm gonna be tuning in on Instagram I'm going to be sharing your posts. So anybody who's interested, you know, I've got these posts coming out and You know your blog lights camera crones. It's really amazing everybody get out there. Take a look

Natalie Hayden (11:34.222)
Yes.

Brandy Schantz (11:59.98)
because you're doing really great work out there, Natalie.

Natalie Hayden (12:02.318)
Thanks so much, Brandy, as are you.

Brandy Schantz (12:04.897)
Thank you so much. This was a Living Chronic.

Brandy Schantz (00:01.42)
We had a little technical difficulty, but we're coming back. So we were just talking about advocacy work and how we both are very passionate about putting time into that, how healing it is both for yourself and what you're going through. And of course, making the world a better place for others, many of whom are far less fortunate. I'm on the board of the Local Crohn's Colitis Foundation and do a lot of work with them.

and you also work with the Crohn's Colitis Foundation and have our, you're going to our big conference next week. So tell me a little bit about your work with Crohn's Colitis Foundation and what's happening next week.

Natalie Hayden (00:34.318)
you.

Natalie Hayden (00:38.284)
Yes, I've been affiliated with the Crohn's and Cletus Foundation for a very long time, even before I came out and shared my story. I remember doing take-step walks back in 2010 with my college roommate who surprisingly was also diagnosed with IBD after college graduation. We lived all four years together. So that makes you wonder, doesn't it? We did take-step walks back then. And then before I really became an advocate here in St. Louis where I live, I did a couple of take-steps walks and was the honored hero one year.

Brandy Schantz (00:47.352)
You

Brandy Schantz (00:56.246)
Mm-hmm.

Natalie Hayden (01:06.826)
After I launched my blog, I got more affiliated locally with the Mid-America Chapter and had the opportunity to MC two of the Gaylas. And I've worked on the National Foundation work as well on different research projects and different articles about IBD pregnancy in particular. And something I'm really most excited about is that I was selected as one of the patient reporters for the Crohn's and Colitis Congress for 2025. So I'll be going to San Francisco and reporting live from the conference.

on many different sessions and I'm so excited to be there, get a pulse on that research and be able to share it in ways that are understandable to the patient and caregiver communities. And it's just so awesome to have that opportunity thanks to the foundation.

Brandy Schantz (01:49.196)
Foundation does such amazing things. I'm so fortunate. I feel so thankful to be involved with this group. know, my listeners know I had a very severe reaction to my humera that caused now some very lifelong health issues that, you know, just are gonna go along with my Crohn's disease, because that's just what life has handed me. And knowing that

the Crohn's colitis foundation is there. One of the many great things they're doing is there's now a study on the safety of these medications long-term because you you talked about taking 22, hey, well, Humira was a huge step forward. The newer medications we have are a huge step forward. I'm now on Stellara. But the fact of the matter is all of this is still new. This has all happened within a 20-year span, which sounds like a lot of time, but

just don't know what can happen after you've been on a med for 10, 15, 20 years necessarily, or what all of the reactions are. How can this affect you tomorrow, 10 years from now, 50 years from now? So every little thing this foundation does is so important from studying the health and safety of Crohn's patients on biologics during pregnancy.

Natalie Hayden (02:51.47)
Yeah.

Brandy Schantz (03:10.528)
to what are the effects of these drugs and what can these reactions look like so doctors can better identify them. It's really important. We're out there every day helping people and I cannot tell you how grateful I am that we have Crohn's Colitis Foundation and honestly, we have some of the best people working in that foundation. I'm truly in awe of how great everybody is and how much work gets done.

Natalie Hayden (03:39.182)
It's truly fantastic. Everybody really genuinely cares. Even if they don't have a family member or any connection to IBD, there's just such a sense of camaraderie amongst people in the foundation. And really, I hope that any patient or caregiver that is watching this does the work and just even goes to the website and sees all the incredible resources right at our fingertips.

Brandy Schantz (03:42.775)
Mm-hmm.

Brandy Schantz (03:49.26)
Yes.

Brandy Schantz (03:58.027)
Yes.

Yeah, because we've come so far and so much of that is thanks to the Crohn's Colitis Foundation. There's such great work being done and you can access so much great information that we didn't have even when I was diagnosed in 2013 because I've only been diagnosed, well guess it's been a little over 11 years now so it doesn't feel that way sometimes. It feels like either one year or 1100, one of the two. But there's just so much we can do.

Natalie Hayden (04:26.124)
Yes.

Brandy Schantz (04:29.206)
And there's so many ways people can help. Take steps teams this week. I'll be in a meeting next week with the rest of the folks that run this thing every year. It's so much fun. I mean, even if you just donate $20 and get out there and walk with friends and take some photos, it's something that contributes.

Natalie Hayden (04:48.942)
Exactly. It's so fun. I'll never forget my, youngest brother ran the team challenge Chicago marathon for me in 2016. And you know, it was so emotional. was pregnant with my oldest and to see my brother, you know, blood, sweat and tears training all those months leading up even crying while he's running the race and pain, um, all to make a statement and spread awareness about Crohn's and colitis. Um, it's something that I'll never forget in my life. And if you're a runner,

Brandy Schantz (04:55.736)
Hmm.

Brandy Schantz (05:06.52)
Mm-hmm.

Natalie Hayden (05:18.136)
participating in half marathons or full marathons for Team Challenge is just unbelievable.

Brandy Schantz (05:25.014)
Yeah, you know, the team spirit coming together, helping people that we all love. You know, because like we said, even if we've never met you, I love you, we're a family, you know, we're in this together. So I'm really looking forward to, yes, I'm really looking forward to your reporting. So tell me, how can everybody check out what's happening at the Crohn's Colitis Congress next week? How can we keep up with your reporting?

Natalie Hayden (05:49.326)
The best way to keep up with it is probably over Instagram. My handle is Natalieann, A-N-N Hayden, H-A-Y-D-E-N, and then the foundation will also be sharing everything that I'm sharing, and then we'll also be sharing it on Twitter slash X, whatever you'd like to call it. And then I'll probably also be keeping track of subject matters that I think are really going to be of interest to the community, and then doing my research and sharing articles on my blog lights, camera, crones. I think that's probably the best way to really

Brandy Schantz (06:10.552)
you

Natalie Hayden (06:18.094)
take the information, take some time to understand that research and the implications and what it means and how you can participate, and then share that through articles. I had the opportunity to attend the Advances in IBD conference in Orlando this past December, and I was a speaker on three different panels. And I took so many research and information that I gained from that conference and have been creating content since. I've learned so much. And when you are just in the room, hearing everything firsthand,

You also realize the exponential amazing amount of research that's going on, the work that's being done by the researchers and the GIs and just how tirelessly they are working to improve our patient experience. So you might feel sad or upset about where you are in your journey, but just know on a daily basis, so much work is being done in our honor to help benefit us, to drive that research, to make more medications.

Brandy Schantz (06:53.048)
Mm-hmm.

Brandy Schantz (07:04.888)
Mm-hmm.

Natalie Hayden (07:13.454)
to improve our quality of life, to get a better understanding of nutrition, all the things. It is going on on a daily basis. And as patients, we can speak up and voice where those gaps are and where we want more research. it's really a win-win to connect on social media, have your fingertips on that research so you can say, when I go to my next clinic visit, I'm going to ask about this. I'm going to talk to my doctor about these studies that are available and how I can participate. I want to know more about nutrition. There's so many different.

Brandy Schantz (07:25.836)
Yep.

Natalie Hayden (07:42.708)
nonprofits and amazing groups out there that you can connect with and really learn. And I think an empowered patient is an educated patient and you are going to feel so much stronger in your disease journey the more that you know. Knowledge really is power with IBD.

Brandy Schantz (07:50.838)
Mm-hmm.

Brandy Schantz (07:58.304)
It really is. It really is. Knowledge and knowing that you have a family out there, support. So even in the hardest of times, we're still there. We're still here.

Natalie Hayden (08:08.29)
We're not going anywhere.

Brandy Schantz (08:10.314)
Nope, nope, we all need help and it's important to speak out, speak up and reach out because that's how we all are going to survive. That's how we get through this together.

Natalie Hayden (08:22.124)
Yes, I mean, it's just even the simplest things like when you're driving to clinic and you know, maybe it's a 40 minute drive and it's traffic and you had to miss work or your children are with you in the backseat going to the doctor's appointment with you and you think, you know, why me? Why do I have to do this? Or you're getting labs every three months and everybody's sick around you and you're like, I don't want to be in this, you know, laboratory right now getting my blood drawn, but you need to. And there's those moments where you kind of have to pause for a second and just kind of come back to reality and understand.

Brandy Schantz (08:31.884)
Mm-hmm.

Brandy Schantz (08:43.394)
yes.

Natalie Hayden (08:50.83)
Yes, this is your normal. No, it's not everybody's normal, but you don't have to see your disease as something that's your identity. It's a part of you, but it's not all of you. used to, I often say, I used to see my IBD and my crowns as a scarlet letter when I was a young 20 something and I wasn't married and not a mom and trying to kind of hide it from everybody in my career. And now I see it more as something that I'm super proud of. You know, I think it makes you a bad ass to be honest that, you know,

Brandy Schantz (08:58.956)
Mm-hmm.

Brandy Schantz (09:04.759)
Yes.

Brandy Schantz (09:14.38)
Mm-hmm. Agreed.

Natalie Hayden (09:17.682)
I worked full-time non-stop until I had my kids. Now I do advocacy full-time. had three healthy kids. I do all the things like everybody else just with a chronic illness. So I think that you have to think of yourself as I'm a little bit extra in a good way. My disease doesn't have to rob me of everything. It can give me incredible perception. When it's sunny outside and I'm able to walk and I have the energy to do so or go for a run,

Brandy Schantz (09:29.184)
Absolutely.

Natalie Hayden (09:43.702)
or take my kids out on an adventure when I do have that energy and feel great, you pause for a moment and you thank God and you say, wow, I'm so grateful for my health today. When I was a healthy, invincible 20 year old, I never once thought, I'm so grateful for my health. You just take a step granted. You don't even think about it. It's just like you would just expect to feel well every day. And with all the sicknesses going around between like influenza and RSV and all these different sicknesses right now, it's terrible, especially in my kids' grades and everything.

Brandy Schantz (09:55.244)
Mm-hmm.

Brandy Schantz (09:59.009)
Nope.

Brandy Schantz (10:04.652)
Mm-hmm.

Natalie Hayden (10:12.62)
You just think, you know, everybody needs to remember they're going to hopefully get better from this in about three to five days. You know, this isn't something that's a lifelong illness. And for us, we don't know what the next day is going to bring. We don't know what dinner is going to bring. So, you know, we have to live in the moment and thrive in the moments that are positive and then recognize when we're in the low points, when we're in our darkest days, that the better days are going to come.

Brandy Schantz (10:19.436)
Mm-hmm.

Brandy Schantz (10:36.436)
Because we have a superpower. One of my big advocacy pushes is hire disabled, particularly invisible chronic illnesses, figure out ways to use accommodations creatively so that you can retain chronically ill employees, especially ones who've been newly diagnosed. And I always say, isn't that the kind of employee you want? Somebody who can wake up in the morning, have no idea what's about to get thrown at them.

Natalie Hayden (10:38.572)
We really do.

Brandy Schantz (11:06.7)
but know that they can twist, turn, duck, jump, do whatever it takes to accommodate that particular unknown today and make it work. Don't we all want that? Yeah.

Natalie Hayden (11:17.966)
couldn't say it better myself. That's so true. You know, it really is. And so many of us in the IBD community were type A personality. So you're just a real go gutters in this community. think every single person I've come across is exact personality. So.

Brandy Schantz (11:25.196)
Brandy Schantz (11:31.32)
Mm-hmm. We are type a plus all the way type a plus So, thank you so much for coming on. I'm so excited to hear you next week. I'm gonna be tuning in on Instagram I'm going to be sharing your posts. So anybody who's interested, you know, I've got these posts coming out and You know your blog lights camera crones. It's really amazing everybody get out there. Take a look

Natalie Hayden (11:34.222)
Yes.

Brandy Schantz (11:59.98)
because you're doing really great work out there, Natalie.

Natalie Hayden (12:02.318)
Thanks so much, Brandy, as are you.

Brandy Schantz (12:04.897)
Thank you so much. This was a Living Chronic.