Alexandra Mitria, IFCCA youth group | IBD podcast EP083, Stetoskop, UKUKS

Olivera Ćulibrk president of the National Association for Crohn's Disease and Ulcerative Colitis of Serbia, Ljiljan Đaković, hosts a podcast with Alexandra Mitria, a young Romanian Crohn's disease patient and leader of the IFCCA youth group. Alexandra shares her challenging diagnosis journey delayed by the pandemic, her management with biological treatment, and involvement in Romania's national IBD association ASPIIR. She highlights the association's educational efforts, legal advocacy, and support activities. Alexandra also discusses her role as youth group leader, aiming to connect young IBD patients globally through social media, webinars, and a Discord platform. 

Tell us a little bit more about yourself and about how you discovered you have Crohn's disease. How was that journey of the diagnosis?

 So my name is Alexandra. I am 26 years old. I am from Bucharest, Romania, and I got my diagnosis of Crohn's disease in 2022. So actually, everything started in 2019. In January, I started to show, you know, the specific symptoms like the diarrhea, the blood in the stool, weight loss, and also those excruciating pain cramps. After that, six months later, I had my first complication, which was a perianal abscess. I got emergency surgery. No one knew what was going on. No one knew what the cause was. And of course, the pandemic happened, which really delayed my diagnosis. I can imagine. Yeah. And after that, I went a lot to the emergency room, but they didn't know the cause of my pain. I also didn't know that IBD existed because if I knew, I would go to a, you know, IBD specialist. Exactly. To an IBD center in Bucharest, but I didn't know they existed. And in 2021, I had my second complication, which was a perianal fistula. I got again emergency surgery. And in 2022, I had another infection and another fistula. And in February, I already got my diagnosis. After my diagnosis, my doctor said, "Well, we'll have to put you on biological treatment because it was a severe disease."  And my response was, "Everything you need to know, just do it because I trust you. Now that I have my diagnosis, I'm actually really relieved." And I'm on biological treatment since then and also in remission, and I feel great. 

So your journey to find what disease you have, I think it's similar to the experience that people have in Serbia. It will usually take a while for doctors to figure out because the symptoms can mask many different diseases. Would you say that in Romania it's the same? Are people waiting a long time to get diagnosed?

 I think the issue is that IBD is not so well known among the people. Okay. Because if I knew about the disease, of course, I will go to my doctor and say, "Please do a colonoscopy. I think I have IBD." Yeah. But I didn't know that IBD existed. And also, there is another fact that people are afraid of hospitals in Romania, and they are afraid of colonoscopies and other investigations. And that's another thing that will determine a patient not to go to the hospital. Okay. I think we have a similar situation here because we are culturally also like pretty similar.

So I think this is something definitely that actually is a huge problem in Serbia as well. So I'm glad you raised that point. So now that we are discussing issues which patients have both in Serbia and Romania, I would like to know a little bit more. How did you find out about your national association? How did you join them? Because you also mentioned that IBD is not well known in Romania, but I'm guessing that your association is working really hard on raising awareness. So you can tell us a bit more about that. 

So after my diagnosis, I searched for an online support group, and I found one where people just shared my national association's post, ASPIR, and I was like, "Let's check it out," you know?  And I saw that ASPIR had a plan to hold a seminar, the first face-to-face seminar after the pandemic.And I had my diagnosis for two months now, and I was like, "I'm going," because the national association announced that there will be a lot of important doctors and famous IBD doctors.And this would be a chance for me, you know, to know about my disease. So of course, I went in May 2022 to my first seminar. The topic was pregnancy and IBD. That's really interesting. My president brought a lot of gastroenterologists, gynecologists, and IV experts. And I can tell you that I learned so much about it because, of course, I'm interested. Maybe I want to have a child in the future, so I need to know all this stuff. So for example, I learned that the biological treatment doesn't have any evidence of affecting infertility, that almost 40% of Romanian women have second thoughts about having a child because they are afraid of passing the gene to the baby. And also, I have learned that you are not allowed to vaccinate for TB your baby in the first year of life. And I was so impressed.

Also, I learned that my national association has a lot of interesting activities like holding webinars for people all over the country to join these face-to-face meetings with the doctors, group therapies. And my president even achieved to change some laws in Romania. That's really impressive. For example, she managed to get every IBD patient free iron IVs if they are dealing with severe anemia. I'm so glad to hear that we actually share some of the initiatives with your association. We also host support groups. We host live events with famous doctors to talk about the disease, different topics.

I'm really impressed that you guys have one event that was focused on pregnancy because it's a huge topic. Every time we host a live event, always a question comes up about this issue. And I'm really glad to hear that you are really involved as a young person in the work of your association. I think it's pretty rare to find. So I think that by this time, we can all agree that IBD changed your life in so many different aspects. And the start of the story, and it was really hard for the doctors to figure out what your disease is. But now, looking down that whole road that you went through, how do you feel about IBD today? And can you also tell us a little bit more about your international involvement?

I know that it sounds weird, but I think that IBD actually changed my life and gave me a purpose. So after my active involvement in my national association, I feel like I'm doing something for the well-being of Romanian IBD patients. And after my president saw that I am actually really interested in getting involved, she introduced me to IFCA, International Federation of Crohn and Colitis Association, which is the biggest ONG dedicated to the well-being of every IBD people in the world. And they do that by raising awareness, by conducting research, by doing educational posts. nd she told me that, well, you know, IFCA wants to reinstate the youth group. And I was like, "What is the youth group?" So she told me, "Well, the youth group is a group of young people living with IBD, no older than 30 years old, who will bring a fresh and new vision to the federation."  After I found out what the youth group is, of course, I was very excited to join the youth group. And we first met, you know, last year in Vienna.  At the UEG Week.  

That's like the biggest gastroenterology summit in Europe, I think. 

And they told us, "Well, we are still recruiting, you know, members, but please do what you have to do. We will have to, you know, do an election for a youth group leader. And after that, we will have to make a six-month plan for our next project." So we did that, and my colleagues chose me to be their leader, which I'm very honored, and thank you all for that. 

And we are planning on doing some really pretty interesting things together. Actually, a small digression from my side. I was actually at that first face-to-face youth group meeting in Vienna, and that's actually how me and Alexandra met. And I think now the youth group has 15 members. I think so. 14 members. And we come from different countries from all over the world. Yeah. Like we went international this year. Before, we were only focused on European countries, but the federation went international. So now we also have members from other parts of the world, which is really exciting. Yeah. Like New Zealand and Brazil. And it's really exciting because now you can get like different perspectives from all different parts of the world, and you can hear what other associations are doing. We can share experiences. We can actually, I think, create better solutions and strategies because we have many different opinions and viewpoints. And I think that will be really valuable for both the federation, but also for the national associations which are involved. And I'm really excited also for the youth groups project because I'm also involved in those.  And I'm really glad that I can help you and the rest of the members to execute everything that we are planning. So Alexandra, first, let me congratulate you on the election. And since you have become the youth group leader, what has been some plans that you guys or we made for the next upcoming year?

So the first thing we thought about is gaining some popularity. And we launched our TikTok and Instagram pages where we will post educational videos, introductory videos, funny videos also. We also plan to host webinars with different interesting topics. And we want to make a platform in English for everyone to, you know, share their experiences, to talk, to know each other, and to launch a Discord platform for everyone to join internationally.

So I would also like to talk about one project that is actually ongoing, and it has actually already started this year. People who follow UKUKS, Serbian Association, on Instagram maybe even know about this, but maybe they don't know the whole context. So in the spring this year, we launched a survey on our Instagram page, and basically, we created a post for call to action for people to fill out the survey, people aged between 18 and 30 years old, about their life with IBD as a young patient.  And actually, I have to say that Serbia had a great turnout because 78 people actually filled out the survey, which put us as a second country with the largest amount of filled-out surveys, which was a surprise to me, if I'm being honest. But I was also really happy to know that young people in Serbia really care about the quality of life, and they also care about sharing their opinion and driving the change. So that was a positive experience for me. But that survey was actually a part of a much larger survey, which was carried out internationally. It was translated to many languages so people can fill out the survey on the national level. And then the researchers of the international federation took all of these results and created some summaries. During our youth group event this year in Berlin, we saw the preliminary results, and you were, Alexandra, on a panel discussion, which was talking about like the initial outcomes, initial findings. So can you tell us a little bit more your experience working on the panel discussion, preparation for it? What results did you find are the most interesting? Is something surprised you? Did you expect some results? Can you talk about it a bit more?

So about the results, two of them were really surprising and not in a good way. So we learned that the most important thing for a young IBD patient is their mental health and also that fatigue has affected their life. So this is a very alarming thing because some of our responders even consider suicide. So this is a very important topic we would like to address in the future. Also, other things that I have learned from the survey is that their sexual activity is affected, that they have some inner anger that is making them very irritable. Also, that they are afraid of socializing because they just feel different. They don't feel like they're part of any community. And another interesting thing is that they think twice before booking a vacation because they start having anxiety about where are the bathrooms, what if I start showing symptoms, what should I do then? And of course, I had a story like that. So it happened to me while I was in Paris. I started showing symptoms, and my first thought was like, "Where's the bathroom?" The bathroom. I know.

I think we all have a story like that. It actually happened to me twice, and both times in Vienna of all cities. Oh. Yeah. It happened one time when I was at a natural history museum. I had to run to the bathroom like four times in a span of like one hour, and the guard was looking at me really weird, and I felt so self-conscious about it. Second time, it happened at one of the ECHO events. And the irony, the day after the meeting, I got symptoms. I called my doctor straight away. But I left my hotel room because I didn't want it to stop me from exploring the city. And I literally went to every single bathroom on every single metro station. Of course. 

Hashtag IBD Live.

Happened to all of us. I know. But like you said, the findings from the survey are really important, especially because they are shedding the light on something that is not usually discussed, and it's the impact of the disease on day-to-day life and mental health. Like when you're talking about mental health, you're also talking about dating, having friendships, going to school. Are you able to study? Are you able to get a job?

Exactly.

That's all a part of that. And the earlier you get the disease, these things are like even more difficult. 

So we also learned that IBD people are facing sleep disturbance. And they also are afraid of IBD financial loss because some of the tests, some medication is not deducted by the state. So they have to pay out of pocket, which is really an issue because if you are young and want to buy a car or buy a house, of course, you will have some troubles. Yeah. You will have some troubles even if you're like healthy. 

But when you add like the cost of being sick to that list, it becomes almost impossible. And the frustration is, I mean, you can't blame people for that. I think it's somewhat expected, actually, for that to happen, for people to feel like helpless and frustrated. And I think that's also a role of the associations to try and drive some change like on the state level, like your president did, for example, having those like shots of iron for like free or deducted by country, which is also really important. But I think also like that mental health support is also really important. I think that psychotherapists and psychiatrists who work with IBD patients, they have to be educated about IBD. I don't think that every single person who is maybe a great therapist in general can be helpful to an IBD patient because it's a really specific condition. And the challenges that that condition brings are also really specific. So I think that having a dedicated therapist in every IBD center, for example, is something that we can discuss. And we have also discussed this during the panel discussion that we had in Berlin this year. 

Basically, after I had my diagnosis, after I got my diagnosis, the first thing I did is to look for a psychotherapist. Yes. To look for a therapist. Of course, now she knows everything. And if my calprotectin is over the limit, she will panic. And she was like, "Okay, what do we do next? What's the procedure? What's the procedure?" We always joke about that. She knows the procedure. I know the procedure. But we are actually trying to do free group therapies in Romania or free individual therapies in hospital, which is still an ongoing project because we don't have the funds. We also talked with the national healthcare system, but it's still in the works. It's still in the works. Yeah. It's still in the works. And I think it's still in the works in many countries. It's a difficult thing to accomplish. But I think that we can be hopeful.

And I think that if we are like persistent enough, I think that we can make that happen, definitely. So now we discussed different challenges which our young patients faced with. I would also like to point out that fatigue is really important for patients in Serbia also. I have spoke with a lot of young patients, and they mention it as like number one issue that they have. And during that discussion about guidelines for ulcerative colitis, the new guidelines, we as patients stress the importance of including IBD fatigue in clinical studies, which is not done because it's a difficult thing to track. You cannot track how the drug affects IBD fatigue, unfortunately. And this is something that is like a new thing even for the doctors. But I think they are hearing usright now. And I think that will change in the future, which is great news for IBD patients.

Actually, this was the second red flag from the survey because fatigue affects the way they are studying or the way they are working. And I think IBD people are really afraid to bring it up because maybe people will think that we just use it as an excuse.  Which, trust me, we don't. It's very hard to work with while being fatigued. And maybe we can also raise awareness about this during our future projects.

And, we spoke about a lot of issues which affect young IBD patients. Can you tell us a little bit more? What is the general purpose of the youth group, and what is the youth group trying to accomplish in general, especially taking these survey results into account?

So our main purpose is to actually create a safe space. We want the people to feel connected, informed, supported, and also to drive change into the healthcare system. So by connected, we want to bring together IBD people from all over the world to share their experiences, to tell us their point of view. By informed, we want to create easy-to-understand educational videos with different topics like biologics, nutrition, and especially mental health. By supporting, we want to be there for them to answer their questions throughout their journey via their national association and IFCA. And by driving change into the healthcare system, we mean that we want to collect young people's feedback about their overall experiences with the healthcare system and advocate for real change.

This all sounds very exciting. And also, I would like you to explain to our young listeners how can they get involved in the work of the IFCA youth group.

Engage, engage, engage. Please engage. What do I mean about that? I mean that to follow our social media platforms and also to be active in our future projects. I know we are at the beginning with this youth group. In the beginning stages. Yeah, with this youth group thing. But we need the help of IBD people in order to grow. So I think in the beginning, this is the most important thing. 

And I completely agree with you because once you start following Instagram and TikTok pages, you can get informed about different activities, future webinars, and you can also take you can also participate in them later on. So it will be really important. 

And also, please tell us what do you need from us. Like, well. Because if you tell me, "Well, I would like a webinar about sexual health." Of course. Great. Amazing. We will do it. So the help will be appreciated. 

Definitely. Feedback is always appreciated. I hope that now people got a little bit more sense about what IFCA is, about what youth group is, because I'm speaking from personal experience when I say that people in Serbia definitely don't hear about it enough. And I'm really glad that you gave us some great points. You covered what the youth group is, what the projects are. And I hope that this will motivate some of the listeners to look for our Instagram page. And we talked a lot about issues that IBD patients are facing. We talked about your personal experience. And we talked about the important work that national associations are doing, but also that international federation is doingright now. And what would be your advice for someone who is like diagnosedright now, who is newly diagnosed, who feels maybe alone and isolated, and who maybe stumbled upon this podcast episode and wants some guidance?

Well, the first thing I would advise them is to join their national association if there is any, because that way they can see that they are not alone in this journey. They don't have to be alone. And maybe they will ask for guidance and will go through this journey with much more confidence. Also, if there is a very active association, they will meet a lot of amazing doctors. And why not make long-lasting friendships like you and I did? And I know this must be scary. I was terrified when I got my diagnosis. But with the support of my national association, with the support of IFCA, my family and friends, I learned that this disease doesn't actually define me. It is a part of me. I embrace it. I accepted it. But it doesn't define me. So please, if you are struggling, if you don't know what to do, just ask for help because asking for help is not a sign of weakness. It's actually a sign of strength. You don't have to be alone in this. So please ask for help. And please remember that life deserves to be lived.