Posted by ImproveCareNow™ on November 12, 2025
As a parent, advocate, and self-described IBD "researcher," Inbal has been on the front lines of her family’s IBD journey for a decade. But this isn't just one story, it’s two. Inbal's family has navigated two separate Crohn's disease diagnoses, years apart: one for her younger son in the pediatric system and one for her older son as a young adult. This gave her a unique, firsthand view of the striking differences between the two healthcare worlds. In this insightful Ignite Talk, Inbal shares her lived experience…the fear, the advocacy, the care, the community, the systems that worked, and the ones that failed, to show us the importance of sharing lived experiences and coming together. Her message is a vital one: the healthcare system must learn from families, not just about them, to bring this kind of supportive care to every IBD patient.
Be inspired by Inbal's #IgniteTalk 🔥
This thing has been in the works for maybe seven years, when Chris asked me to talk and I said no…never had the guts. So now I do. That was a joke.
So, anyways, as both a parent and advocate in the IBD community, I have witnessed firsthand how our healthcare systems succeed brilliantly in some areas and are failing also in others.
There is a different type of coping that parents use throughout navigating work when their kids have IBD. You have the researchers: they read, they study medical publications. You have those that trust the doctors: they just do whatever they say, they follow the recommendations. Some people are program managers: they do the appointments, the bills, the medication, life. And then you know you have medical professionals - suddenly they find themselves on the other side of the table. I'm sure there are a few here that you don't even know, that the person sitting next to you on the table is either struggling with IBD, knows somebody from their family who has it. And you can have different styles; each family is using different styles. Some people use a mix of ways.
I am mainly a researcher. When my son was diagnosed, I dove into articles. I read and read and read. I wanted to know. And if you'll ask my kid’s doctors, I'm a pain. I always share my opinion, and I fight with them. I'm also a pragmatist; I am really good at juggling...at work, at life. So, I juggle kids and their care. And I'm a connector. I really like to bring people together.
Life taught me that I'm also a very good advocate. I like to represent those who cannot talk for themselves and I also like to listen and to bring people together. Today I would like to share with you the story of my family and what I have learned in the past 10 years.
So, this is a story about two diagnoses. It's two journeys that reveal a very stark contrast of our healthcare system. I have one who is a pediatric and the other one was diagnosed as a young adult. The difference was amazing. The youngest was diagnosed with Crohn’s disease in August 2015. As a researcher, I was a student of chronic illness, and this is not my occupation, by the way, I'm an engineer. My middle was diagnosed last year - nine years later - August 2024. I thought I had it all. I really did. And then I realized that there is so much more you need to learn.
Omri's Story
I remember when Omri was 6 years old, I was laughing about we don't need to find new clothes. He wore the same one for the last two years and everything is awesome. Yep. He became the youngest and the shortest in his class. But he was also so cute, and funny, and adorable, and all the teachers loved him.
Every summer we made a point to his yearly physical, and his PCP told me you know what let's draw blood in six months because something is…let's see if it's changing. I think at that time she already suspected but no red flag for me. And then things changed. He started school - third grade - and started to complain it hurts to sit, I don't feel comfortable. So he goes to the doctor, we try this antibiotic we try that antibiotic, and then there's a phone call. Unplanned surgery to drain an abscess that we now know was a fistula. And it was an adult surgery facility the PCP organized - nothing pediatric over there. Two more weeks passed, we went to a GI that we knew from his early age, and we got the Crohn’s diagnosis. Our PCP was very supportive and caring. She called me, she kept an open line with us. The GI…not so much. We learned from him in a very, very harsh way, that the worst-case scenario is cancer and death.
So, we switched to Lucile Packard Children's Hospital, and we met a wonderful caring and collaborating team (go Rachel [Dr. Bensen], go Anava [Dr. Wren]). And we rolled our sleeves.
We started to learn.
We started to plan.
We started to educate ourselves.
The focus was to support our child. We needed to teach him to deal with what he has and tell him that whatever hand he got, it’s fine; he can reach the moon should he want to.
We became researcher. We started to question. We organized appointments, medication, school accommodations. We worried. We navigated uncertain waters.
We translated complex medical information for our child, for his siblings, and the school support system that did not know anything about Crohn’s.
We worried about money, about health insurance, and we discovered how unfair this healthcare system can be.
Most importantly, we wrapped ourselves in a circle of care. And this care continued when we moved from California to North Carolina three years ago. Wonderful UNC team…Dr. Gulati, we could not do it without you.
We created resources. We joined team with our IBD care center and we really, really had a lifeline of support. This lifeline included a group of parents on Facebook, on WhatsApp, ImproveCareNow community was really an important side of this, Camp Go Beyond (summer camp), and an IBD-led activities that were really, really helping and starting to build a community. Our circle of care was growing, and we started to become part of other families’ circle to support them.
So, from time to time, my son began to mentor newly diagnosed children. As parents, we started to help other parents that had recently diagnosed children. We turned our experience into purpose.
Niv's Story
Niv, my second son, was 22. He lived independently across the nation when his symptoms began. And unlike Omri, he faced it without the embrace of pediatric care. He found himself navigating the adult system while in pain, discomfort, and alone. The timing was not great. He was doing his senior year internship and summer classes which he wanted to graduate early. His symptoms were very, very different. So, we did not even queue into that. We did not understand that there is something big going on; did not even occur to us. We thought it's a small thing, that he's turning a mouse into the mountain. No family to support, no collaborative healthcare. So, he had to do something else, and his friends became his line of support.
Once we did realize that this is serious, we guided, supported, and we reached out to the ImproveCareNow connections (Shehzad, thank you). And this helped with securing a meeting with a GI doctor, and within weeks we got the diagnosis. Without that help it would have been months. Our prior experiences and knowledge also helped us because we asked for specific tests that we knew the GI will want in advance. So, coming to this meeting already with calprotectin, for example, which was in the high 2000’s - it really helped accelerating the path for treatment.
If Omri relied on family for support, as I said, Niv had other structure. He chose vulnerability, openness for his peers. So, his friends escort him to infusions. They help him to prepare food. They helped him with school. And after graduation, he did not get an offer from his summer internship because he was absent a lot of the time. He moved back to North Carolina for his family to support, to love him. He's now prospering. He's in Richmond, Virginia, having the best time of his life.
Niv grew watching his brother with IBD. He usually ignored it, he had other stuff that he had to deal with. But when IBD was his diagnosis, I don't know if watching his brother helped him or made it much harder, because he saw everything that he went through. He had to deal with the diagnosis of a chronic illness, and he had to remember the life before. It was tough. There was a shock. There was a grieving over the life that he lost, the freedom that he wanted, all his dreams. He was very, very angry. Why me? Why now? It's ruining my whole plan.
And then there was the acceptance. How do I integrate IBD into my life, into my work, into my day-to-day? But his grief was real, and it required from us to do differently and support him in different ways.
The difference between pediatric and adult network is striking. It was hard to get diagnosed. It was hard to secure meetings. There was no support, no community. No one mentioned how he can help financially and go to the pharma companies for help.
There were some rays of sunshine when his GI doctor allowed me to be by him as he was prepped with colonoscopy. So very pediatric way, that was really nice. The transferring to North Carolina was really, really hard. It was nothing like hey I know this doctor that doctor...was very hard. UCI team refused to transfer the information. Very complicated.
Now he's 23 and we started to run into adherence problems. He does not want to do this. He does not want to take that. There is nothing we can do. We'll just be there to hug him and help him even when he falls.
I believe that expertise from our lived experiences can bring value to the healthcare providers. It brings value to other parents and to patients. And I urge the healthcare community and system to learn from families not just about them. It can really, really help you guys.
Supporting connections between people with lived experiences creates powerful healing opportunities.
So, this is not just a vision. It's already happening here in this room. Our story has two children, same diagnosis years apart. Pediatric, young adult, and as a family, we lived everything through the system, the fear, the confidence, the advocacy.
Through ImproveCareNow, I saw what it means for a system to truly learn from families, not just about them…and patients…how partnering with a care team helps the individual patient as well; it helps their families, it helps the IBD community. So, let's bring this kind of care to every IBD patient, to every IBD care team, at every IBD health system.
Thank you.