From IBD Diagnosis at Age of 4 to Building Social Impact - an Interview with Regan Gallo

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Recently, our Co-founder and CEO, Victor Bian, sat down with one of the Allay Community members, Regan Gallo, to discuss her life story as an Inflammatory Bowel Disease (IBD) patient. Regan took us through the battles she fought since she was first diagnosed with Ulcerative Colitis at the age of 4. She went on to overcome the various challenges of growing up with IBD, recently graduating from University of Washington here in Seattle WA and starting her career in the technology industry. Regan has been actively involved with the Miss America Organization, and she was selected as Miss Pierce County this year. As part of her efforts running for Miss Washington, she is building a social campaign in raising awareness for IBD as well as chronically ill patients.

Full Interview: https://youtu.be/n9XTsuBK3WY

Victor: Hello everyone, I'm super excited today to be joined by Regan Gallo. Regan is an IBD patient and has a very exciting story. I'm super excited to interview you today. 

Regan: I'm excited too! 

Victor: So why don't we get started by having you tell us a little bit about yourself? Things like who you are, where you're from, what you do - career wise and hobby wise, and certainly we'd love to hear a little bit more about your story with IBD. What form of IBD did you have, when were you first diagnosed, and where are you currently in your treatment journey? 

Regan: Yeah, well hi everyone out there! Again, Victor, thank you for the introduction. My name is Regan and I am a young professional in the greater Seattle area. I am an IBD patient of Ulcerative Colitis (UC). I've had UC since I was only four years old, and I will be 24 this fall. So almost 20 years... And right now I’m working for a tech startup here in Seattle. I am in software sales, so that's what keeps me busy. In my downtime, I compete in the Miss America Organization and I'm able to really connect with people with IBD with that platform. So those are some of the things about me that keep me busy. But I'm excited to be here and talk more about IBD and get to know the community!

Victor: It's always interesting knowing that you were first diagnosed with Ulcerative Colitis at age of four. It's such a young age. 

Regan: Very young. 

Victor: Could you walk us through your story of diagnosis? 

Regan: It was crazy. Sometimes I don't remember at all because I was so young, but what really happened was one day [I wasn't really conscious of it] there was blood in my toilet bowl, a lot of it.  And I went to mom and dad and said: “I have no idea what this is. What's going on?” I was only four years old and it probably was happening prior, but I just had no idea that that was a bad thing. We rushed to Mary Bridge Children’s Hospital in Tacoma, WA. I had to have a blood transfusion from my own Dad. Because I had lost so much blood they didn't know if I was actually going to make it. That was traumatizing later on when I thought about it. But when I was so young, I had no idea. That was really hard and I was in the hospital for my 5th birthday. I went into remission for about a year and then got sick again around six or seven years old. So it was a turbulent 3 years after that first diagnosis.

Victor: How did you personally and your family respond to the information that you had IBD and the news that you would be chronically ill?

Regan: It was hard. IBD is actually something that runs in my family, not in my immediate family, but I have a grandmother who doesn't have a colon anymore and I have some cousins who have Crohn's. In my immediate family – I have two brothers and both of my parents – no one else was diagnosed with IBD. So they didn’t have experience with it.

Now what I push for is being proactive about learning about IBD because my parents knew people with IBD but didn't know how to take care of their own kid when it happened. That was hard because they had to learn just as much as I was learning. So balancing that for them as young parents and for them to continuously learn [about IBD], but then understand that they're going to have to be a caregiver [for a kid with IBD] for a long time was definitely a battle. 

Victor: From your perspective, did you ever develop a feeling at one point that you were going to be a little bit different from the other kids or the other people? 

Regan: Most definitely, I always wondered, out of my family of five, why me? Why was I blessed or cursed, whatever you want to call it, [diagnosed] with UC. I asked myself that throughout all my formative years growing up and it definitely hit later. In secondary school, when you're trying to fit in and there's that peer pressure and you have this disease to think about all the time. So always I thought about: “why me?”

Victor: Did you ever develop a system to support yourself and get yourself through that? At a super young age, what did that support system look like? 

Regan: My parents were super involved in my health, and they always wanted the best for me. So that family support was always there. I think when you're going to school and you're being a kid, it [What’s important] was learning how to navigate, how to have conversations with teachers or with your peers at such a young age at 12 or 13. Some people were able to understand it, others were not. I kind of had to just take that with a grain of salt. I was learning that not everyone is going to understand what you're going through. You're having adult conversations with your doctors that kids are not thinking about at all, and they won't be thinking about for years because they are just healthy. That was the kind of reality that I had to go through, especially when I got into secondary school at that young age. 

Victor: When did you start to realize that “I could be basically the same as everybody else”, “I could still go on and lead a very positive life”? When did that come in? 

Regan: Probably around 14 or 15 years old. At that point, I had been diagnosed for about 10 years - I knew I was becoming a teenager and was getting a little bit older. I realized I didn’t want to be just a patient anymore. I wanted to learn more about this disease, but also about others around me who might have this disease.

At that point, I was still really lacking a community with others that were going through the same thing as me. I actually started volunteering at the local hospital in Puyallup, WA as that's where I'm from originally. That was my first step into being not just a patient. Learning how nurses and doctors give care to their patients gave me an idea how they look at patients. Although I was just doing very basic things in that hospital [such as] cleaning after everyone, it was my first step at 15 years old when I wanted to do more because this [disease] had affected me and I wanted to give back [to the community].

Victor: IBD has a lot of symptoms that could sometimes be very debilitating and change could be a huge trigger for these symptoms. However it is such a perpetual theme while you're growing up and certainly being an IBD patient. What are some of the challenges that you encountered growing up with IBD and how did you manage them? 

Regan: It was hard to manage because I was still a child going into teenage years. When I was about 15, 16 years old, I wasn't responding to medication. In fact, a big diagnosed population for chronic diseases like IBD is during that young adulthood or teenage years when the hormones are changing. That was exactly what happened to me. I was going through puberty, and nothing was responding. We went through doses of Prednisone and still I was not feeling healthy. Then we decided that the next step was to go on Remicade.

That was a hard realization when your body was basically telling you [medications] were not working. My doctors were telling me [medications] were not working and we had to go to this next step [to try a new medication]. And I remember being in the Children's Hospital crying when the nurses came in with the brochures to talk about Remicade, knowing that this was going to be every 6 to 8 weeks of your life for who knows how long. There were going to be nurses coming into your house, then there were going to be side effects of immune suppressant drug [which is what Remicade is]. That was a domino effect because the more infusions I had the harder it was to fight off a common cold. I had shingles at the age of 15 on [the left] side of my face because my immune system was weak from the immune suppressant drug.

Then there is [the question of] how to explain [that to other people around you] when I was in high school and couldn't go to the Saturday morning track meet because I had my infusion on Saturdays. That was something I always had to navigate. People were like: “Infusions? What are you talking about?“ For so many kids who are very healthy day to day and don't even have to think about what their body is doing, I had to really figure out how to communicate [my limitations] with them. A lot of times, being young, I just kind of did it in a humorous way, because I was trying to cope [with the infusion] and no one really understood it.

I feel bad that I did that to myself, but that was my high school era. I was on Remicade all the way through until [I was] 21 years old. I took that to college with me. I had people come into my dorm and my college apartment for my nurse to do that infusion. Balancing college with the infusion drug was a whole new chapter that was even harder.

Victor: That is a part that I'd love to double click on because I know you recently graduated from University of Washington here in Seattle. Moving to Seattle for school was probably the first time you left your family and started transitioning to taking care of yourself and your own condition. Can you help us understand what that journey looked like?

Regan: It was important for me to still be close to my doctors here in the Pacific Northwest region. I could have gone to school out of state or on the other side of the State, but I wanted to be close [to my doctors]. And being at the University of Washington in Seattle, I was really close [to my doctor since] they are in Seattle. I aged out of my Children’s Hospital and now I was the one taking myself to those doctor's appointments between college classes. I think the hardest part for someone with the chronic disease entering college is that your whole care routine is totally wiped because you're in a different environment. You're maybe in a dorm room or an apartment, not in the home that you're used to. There are people around you all the time and maybe they don't have your best interests at heart like your parents or your family members maybe did. I had a really hard time living in a dorm with a roommate who maybe didn't understand what this disease implicated for me. I decided to get my own dorm room for my second quarter.

[Getting my own dorm room] was a [complicated] process because the University of Washington, like many universities, are huge and they have totally different offices for different things. So here I was trying to go to the disability office to get dorm accommodations, and at the same time I had to go to the housing office to get dorm accommodations. Since the two offices don't communicate with one another, I was hearing different things all the time. This eventually turned into a six month process to get either the the room or the classroom accommodations I needed. Once I went through that, I realized that [the process of getting a dorm room as an IBD patient] was really hard and I remember I had to keep calling people at the university multiple times for them to follow through or just to make things in check. That was why in my second year into University of Washington, I decided I want to help others because I was probably not the only one living with IBD on the University of Washington campus. I created this club with one other friend of mine. The sole purpose was to create a community for students with IBD, at the same time, to get those classroom or dorm room accommodations, because unless you know where to go on the university to get those resources, it's really hard to find, and it's a long process. 

Victor: How long did you run that student club? 

Regan: Two years. it kind of fluttered out because of the COVID-19 pandemic, which was really hard. But in those two years we even had students who drove from the Bothell campus to Seattle campus on a Tuesday night just to be able to talk in a room together. It was just a really cool shared space [for us with similar backgrounds]. We were all going through college, we were all going through the same classes, and we were all going through the same health issues… and we were all you know, aged 19 to 25. It was a really cool few years that we were able to spend time together before COVID-19 to understand how everyone else was handling this. 

Victor: Yeah, I'm super curious. How did COVID-19 affect you? When everything the world was used to just changed overnight, how did that work for you guys? For you and the rest of the community with IBD, what were some of the specific challenges you saw? 

Regan: It was not a challenge, but something that I thought was: “whoa, this is kind of cool”. With COVID-19, it brought this new visibility to people that are immunosuppressed. Like a lot of people with IBD, that was the first time I had heard people talk about immunosuppression outside of my household or outside of my doctor's office. And I really actually appreciated that because it had been happening to so many of us in the world but you just didn’t see it. So that actually was kind of a positive thing I thought happened with the COVID-19 pandemic.

[When it comes to vaccines,] I know a lot of IBD patients who were very worried: “how is the vaccine going to affect my my body, my ulcerative colitis or Crohn's?”. That was a conversation among a lot of IBD patients. Now with a lot of research, my doctor can tell me confidently: “you're safe to get the vaccine… you're totally fine.” But [I had] that moment of hesitancy because I had been on medications that had hurt more than help. So for a while I just wanted to make sure I would be safe and my body would not flare [after taking the vaccine]. I know a lot of IBD patients were juggling that for the first year or so of COVID. 

Victor: Yeah, absolutely. So we've been covering a lot of your past so far and I love to shift the focus to the present. While it's always fascinating to know that you're in the Miss America scholarship program, I only recently got to know more about their program through you… By the way, congrats on becoming Miss Pierce County!

Regan: Thank you. 

Victor: That's a very big achievement. I'm curious what made you decide to go into competing in Miss America Program in the first place?

Regan: The Miss America Program is the largest women scholarship provider in the United States. I [first] entered as a teen about six years ago now and I loved it. I loved being on stage, but after that first go around, I realized it was way more than that.

In Miss America Organization, every title-holder has to have a cause that they are passionate about, and one they're bringing to the community. They call this a Social Impact Initiative. Mine was just very natural to me. I was diagnosed with ulcerative colitis when I was only four years old so I decided I'm going to support this community and bring visibility not only to IBD patients but to all chronic diseases because we are all living very similar lives being diagnosed with the chronic diseases.

Now I was crowned as Miss Pierce County in February of 2022. There were lots of young women vying for the title. I came out and was able to walk away with it. Now I am going to compete for Miss Washington in just a few weeks. I'll be able to speak on the importance of making the invisible visible, advocating for those with chronic disease, especially ulcerative colitis and Crohn's. It's not only about ensuring that I can advocate for others, but also about teaching those who maybe haven't lived with this disease for long or who are new caregivers, how they can advocate for their patients or themselves in the community when others don't really understand what the disease is. It is also about making sure they have resources from the Crohn's and Colitis Foundation or the Allay Community, or just ensuring that they know where they can get support also from a preventative perspective. 

Chronic disease is very environmental a lot of the times. I want to make sure that you know what we are doing right now is going to promote our health in 10 years. I have been able to manage my disease by doing preventative things in my day to day. That helped my gut health and helped my overall mental health and well-being. I want to make sure other people are taking those steps so they aren't diagnosed with chronic disease down the road. It's all those things packed in one. 

Victor: That's super interesting. I'd love to talk a little bit more about how you advocate [for your community]. What are some of the measures that you've taken to advocate for this community? I'm also really curious about how you prepared for Miss Pierce County in the first place. How did you win while managing your condition? How were you able to manage all these while you were still in school or after you started your career?

Regan: Yeah, well, the first thing I would say is I have had a long winded relationship with the Crohn's and Colitis Foundation Northwest Chapter. They cover not only Washington state but Alaska, Oregon, Idaho and Montana as well. They have to cover a lot of space and because they are a small team. I wanted to help them ensure that their message was being spread across the states and across the region. I've made sure that I've partnered with them, volunteered and been on planning committees for a lot of their fundraisers. I've raised a lot of money myself for the Crohn's and Colitis Foundation, because I know how important it is to have those resources some people don't have the access to. And that's where the foundation meets people in the middle to help those patients.

My involvement started back when I first started attending events for the Crohn's and Colitis Foundation as a 16 year-old patient [which helped myself as a patient]. Then again when I was at the University of Washington, having that group that I was able to connect with for those two years [also helped]. Even having a presence on social media [helped]. I am able to have that medium if I'm not able to connect in person to talk about daily things that we all go through with IBD. Those are just a few things [I had to be able to manage my condition]. And when it comes to managing [the life of] becoming Miss Pierce County [with the rest], I do have to say working full time [while] trying to compete for the role of Miss Washington [in addition to] being a public figure in the Pierce County community has been hard.

I think sometimes you have to make boundaries for yourself in order to take care of your health. [For example,] sometimes I'm going to prioritize sleeping on this afternoon because my body just needs rest. It just needs two more hours of rest. Another big thing is [making those boundaries while] being a young professional. I'm in a role where we do go to happy hours and I actually choose not to drink. I don't drink alcohol. Because I just know that my liver has been filtering things for so long. I want to promote a long, happy and healthy life. That's a personal decision I've made. Not saying anyone has to do that, but it's just something for me that some people don't understand when I'm in social situations. But I'm trying to promote a healthy body within my gut and my liver. And that's just a boundary I've made. It's been great for me. But it's something that I've thought about really hard because drinking is such a social thing. Not drinking is another step I've taken to just be proactive. 

Victor: That's really cool. How did you communicate your chronic illness with the people around you, especially going into work when you have a lot of these social events? There are things that you tend to stay away from because you are a little bit more aware of your health, and then there are things that you can't do. How did you communicate that information to the folks around you? 

Regan: When I first started my job right out of college, I had the opportunity [to communicate my needs] with my first manager ever. He was actually new to the manager role, and I was on his first team ever that he managed. [There was one time] I said: “hey, can we hop on a meeting for 10 or 15 minutes… just want to talk to you about my needs.” He was super open, super flexible, which was great. It was an opportunity for me to speak to someone who has never thought about a disease like [IBD] and I was just able to introduce [him to my condition]: “this is what I have and this is what my needs are… you know I might work more remotely, just so I'm comfortable where I am.” Although he hadn't been aware of the disease before, I walked away knowing that I could teach someone else who was never aware and never been involved [about IBD]. This is someone that I walked into in my life and more people could walk into them. [Realizing] I was that first introduction [to IBD for my manager] was an awesome moment for me. Really, for me it's just communicating and being willing to communicate with HR or my managers, but not everyone can do that or is comfortable with that. So I would just say to be confident in yourself, put boundaries, and write them down so you know exactly what you need. You can communicate that with the important people in your work life and in your social life.

Victor: I know that you work in tech and obviously being in Seattle. Tech is such a big industry and has a big presence here. Could you remind me again what you studied in college?

Regan: Yeah, I studied something totally different. I was in [one of the] pre-law majors. I thought I was going to law school right away. [However] during COVID-19, I didn't want to go back and go into Graduate School or get my law degree online. So I took a little bit of a break. But during that time at UW, I made sure I did different internships like marketing and sales so I could really diversify what I was learning about. That landed me a job at a software company, a tech startup here in Seattle. I feel very blessed to be able to balance my disease, but also have such a cool work environment that is in the city of tech. 

Victor: [It’s] so fascinating to hear your story on going into tech being a young professional, female, and balancing IBD which could have some debilitating impact. At the same time, you're also running for Miss Washington. That's a pretty busy lifestyle, right? 

Regan: It is. 

Victor: And you manage to handle this and juggle these different things pretty well. I mean, it's pretty amazing, and I think it's a very inspiring story to myself and to all the audience out there. So kudos to you. 

Regan: Thank you. 

Victor: Could you tell us what your life and career aspirations are?

Regan: Ah yes. We will see if I become Miss Washington in a few weeks. Who knows!? There are 21 candidates. But after my role as Miss Pierce County, I would love to go back to school and go to Graduate School. I studied pre-law at University of Washington. With COVID-19, I didn't want to go back to school in the midst of online schooling. But I wanted to have that real graduate program experience, so I'm hoping to apply in this next fall season. Either I would go into business communications and PR (public relations) or I would love to do broadcast media. My passion has always been engaging with people, networking with people and just storytelling and connecting. It's kind of weird. How do you bring that into a career right? I've still been trying to balance that in my undergrad, but that's what I really want to do and go down. 

Victor: That's fantastic. So before we wrap up the interview, is there any advice that you would like to give to other young patients with IBD?  

Regan: I think sometimes I'm really hard on myself with my disease and I want to “go, go, go” all the time. Sometimes I forget that I normalize my disease a little bit. I'm almost too used to it where I don't realize that other people aren't going through this. I've been dealing with it for so long, but for those who are maybe new to the disease or who are going through a flare up or a battle in their journey of inflammation, [my advice is]: when you're going through that, just know that the disease does not define you.

I have always been someone that wants to do more or wants to learn. I want to remind other people that despite their disease, despite Crohn's or ulcerative colitis or even IBS (irritable bowel syndrome), you can do so much in your life and you're so capable. Just put yourself out there. Your disease makes it unique. It's an experience that no others have had. With it you add an extra layer of that unique level that others don't have, and you have that experience in that perspective that only such a small group of people have. So just put yourself out there and never be afraid to go after what you want. Because that's what I've been through. That’s what I've been putting through my mind as I go into Miss Washington or being Miss Pierce County: “I'm an advocate for this disease and it's part of me”.

I'm actually so thankful and feel blessed because it's changed my whole perspective on life. So as much as sometimes I ask: “why me?” It's really a blessing in disguise. 

Victor: I'm so glad that you're carrying this mission to impact the others. It's an incredibly inspiring and empowering story. I've always loved the term “chronic illness warriors” because it actually makes you stronger. Even though sometimes [the disease] makes you weak physically, it definitely builds up that mental strength, and Regan is such a good example. So thank you for the time today Regan. We really appreciated the conversation, had so much fun!

Regan: Thank you, Victor. Thank you everyone for watching.