Tina Aswani-Omprakash began experiencing symptoms as a child – joint pain, eye inflammation and digestive issues – but no one connected them. Without a diagnosis, health insurance, or support due to the cultural stigma surrounding inflammatory bowel disease (IBD) and Crohn’s disease, Tina endured a long and painful journey to understand her own body.
Today, she’s a patient advocate, storyteller and CEO of the South Asian IBD Alliance (SAIA), using her lived experience to support others – especially young people and families – facing similar challenges.
Own Your Crohn’s
South Asian IBD Alliance (SAIA)
Guest:
Tina Aswani-Omprakash, MPH, CEO, South Asian IBD Alliance (SAIA)
Host/Producer: Carol Vassar
TRANSCRIPT
Announcer:
Welcome to Well Beyond Medicine, the world’s top-ranked children’s health podcast produced by Nemours Children’s Health. Subscribe on any platform at NemoursWellBeyond.org or find us on YouTube.
Carol Vassar, host/producer
Each week, we’ll be joined by innovators and experts from around the world, exploring anything and everything related to the 85% of child health impacts that occur outside the doctor’s office. I’m your host, Carol Vassar, and now that you are here, let’s go.
MUSIC:
Let’s go, oh, oh, Well Beyond Medicine.
Carol Vassar, host/producer:
Joining me on the podcast today is Tina Aswani-Omprakash. Tina is a patient advocate and an extraordinary storyteller as well as the CEO of the South Asian IBD, that’s Inflammatory Bowel Disease, Alliance known as SAIA. Tina lives with Crohn’s disease and her personal health journey is one marked by resilience, advocacy, and a deep commitment to changing the narrative surrounding both IBD and Crohn’s. Her own story begins in childhood with symptoms that were either dismissed or misinterpreted in a diagnosis that would take nearly two decades to receive. Along the way, Tina faced tremendous barriers, loss, poverty, stigma, and limited care access, all of which shaped the advocate she has become today. She’s here to talk about that journey and how it informs her work now, helping both children and adults navigate the same challenges with dignity and support. So let’s begin when Tina was just a child. Where did Tina’s path toward a diagnosis actually start, and why did it take so long to get there? Here’s Tina Aswani-Omprakash.
Tina Aswani-Omprakash, CEO, South Asian IBD Alliance:
That’s a great question, Carol, and I’m so glad we’re starting here because I think a lot of folks really struggle with getting that diagnosis piece and actually seeing a doctor. For me, around the age of eight, I was complaining of significant joint pain. I was starting to have a lot of what they called allergic conjunctivitis, so eye issues, eye inflammation. And since the age of three or four, since I can remember, I’ve struggled with severe constipation, and none of these were assigned a diagnosis. The pediatrician that I saw at the time was saying, “Oh, her joint pains, her ankle pains, those are just growing pains, and she just has allergies, and that’s why the allergic conjunctivitis.” But the reality was that there was more going on, and I think we realized that down the line.
I didn’t have insurance after my father passed away when I was eight years old. He was 39. He passed from Crohn’s disease that turned into colorectal cancer, and we didn’t know what the preclinical symptoms looked like. There wasn’t a lot of education back then. There weren’t podcasts like this one or blogs like my blog, Own Your Crohn’s, or even SIA as a nonprofit doing this kind of education, so we didn’t know that joint pain, eye issues, and certainly IBS-like symptoms could be preclinical symptoms of inflammatory bowel disease, also known as IBD.
So my journey actually started back then. I was not diagnosed until I was 22 years old, when I got health insurance, started to work, I went to see a South Asian PCP that was known to my family, and he was like, “Well, why would you need a colonoscopy?” I was like, “Well, my father passed away from CRC.” He’s like, “South Asians don’t get CRC.” I’m like, “He had Crohn’s disease.” He’s like, “South Asians don’t get Crohn’s disease.” I’m like, “My father passed away.” It took a lot of advocacy on my end, and I didn’t even know it was advocacy back then to say, “Hey, you need to get me a colonoscopy, Doc.” And I was 21 at the time and got my first colonoscopy at 22 and was then diagnosed with ulcerative colitis, which was actually changed six years later to a diagnosis of Crohn’s disease.
Carol Vassar, host/producer:
So you went through quite a journey between the age of early symptoms at three or four years old all the way to the age of 22 when you got health coverage, healthcare coverage. Talk about healthcare access between the time you were a child, especially around the unfortunate death of your father when you were, I believe, eight, and how that presented a barrier to that diagnosis.
Tina Aswani-Omprakash, CEO, South Asian IBD Alliance:
That’s a great question, Carol, and it was a real challenge back then in the sense that my father, he was working at Bell Labs. He was an engineer, had a good job, and so we had health coverage through him. But once he passed away, my family went into poverty. My mom was a housewife. She was 27 years old, an immigrant from India, and she was honestly working at McDonald’s to try to bring food to our table, and it was really, really challenging for us to have health insurance at the time. We couldn’t afford it. Health insurance in the United States is often tied to employment. And until the Affordable Care Act, around 2010 to 2012, there really wasn’t much coverage for anybody under the age of 26 without a job. If my mom did not have a job that was providing health insurance, I didn’t have health insurance.
So that was a real barrier to me seeing a pediatrician as a teenager or as a preteen, even, and it was a real barrier to me seeing a GP when I turned 16, 17, 18. So I had no healthcare during that time. If we needed anything, it was usually I sprained my ankle or broke a finger playing basketball, and that was just us going into the ER. All our care was done through the ER. And this is something that we hear, unfortunately, in the communities with lower socioeconomic status, even some communities of color, immigrant communities, that we don’t have the kind of healthcare access as a result of employment or as a result of socioeconomic status, until the Affordable Care Act came around. And even now, Carol, I think it’s important for me to emphasize that a lot of folks do not have healthcare access because even the plans on the Affordable Care Act, the Exchange, are quite expensive, and to get coverage for biologicals and other expensive drugs and diagnostic procedures, scans, things like that that you need for IBD, can be extraordinarily expensive and cost-prohibitive.
Carol Vassar, host/producer:
So even today, if you have a chronic disease, there are barriers to getting your diagnosis and your treatment and the medication that you need to move forward with your life. You also talked about how you had gone to a South Asian doctor who said, “Crohn’s disease, not us.” Talk about the stigma around IBD in particular and also generally within the South Asian culture from which you hail, and how that impacted your patient journey.
Tina Aswani-Omprakash, CEO, South Asian IBD Alliance:
Oh, that is such a huge part of my journey, and I think I recognize that it couldn’t have just been me. So cultural stigma, and that’s the phrase I often use, is because I wondered initially, when I was diagnosed and even before I was diagnosed, is this my family or is this a broader problem? We did not talk about my father’s illness. I really didn’t understand what my father passed away from. No one sat me down and explained it to me. I just came downstairs one morning and found out my father had passed away. And I used to go see him in the hospital, just knew he had cancer, really didn’t understand the dynamic of what IBD is and what CRC is. And little did I know that certain races and ethnicities don’t even participate in research or clinical trials, oftentimes. I didn’t know any of that.
So with the cultural stigma piece, I think it’s important to note that certain cultures, certain communities, when it comes to inflammatory bowel disease, it can be as stigmatized as something like mental illness or sexual assault. I don’t say that lightly. Inflammatory bowel diseases up there with some of the most stigmatized ailments and circumstances that people go through. For me to talk about this, it brings shame on my family, it affects my own marriageability, it affected my sisters’, potentially cousins’, brothers’, siblings’, all kinds of family members’ marriageability, and it is putting a lot on the line.
I still hear today, “Tina, why do you talk about this?” Yes, most people praise it now because they understand the impact that it is having. But I still hear today, “Tina, oh my God, this is about your bowels. This is about your digestion. We don’t talk about that.” And some of the even more stigmatized aspects of IBD include fistulas, which are tunnels between, say, the colon or rectum and your skin or other organs, even your private parts. I’ve been talking about rectovaginal fistulae, I’ve been talking about perianal fistulae, I’ve also been talking about ostomies, which are considered so taboo, and frankly, they’re considered disgusting that we don’t talk about it, and many of our aunts and uncles or parents may have had ostomies in previous generations, but it’s something that we absolutely don’t talk about. And so oftentimes it was not known that somebody had colorectal cancer, colon cancer, or inflammatory bowel disease in the family, because it was just not something we talk about, and it brings significant shame.
Then there’s another piece to this Carol that I have to emphasize is in Asian traditions, and this isn’t just South Asian, I want to emphasize that, there is very much this respect for elders. We want to respect what our elders have to say, and there is a real mistrust towards Western medicine. Many of our countries have been colonized. There has been experimentation, the mustard gas experiments in South Asia, that we just don’t trust what the West has to offer. And this is inherent. It’s built into our culture now. It’s neither here nor there, and I can completely understand where it’s coming from.
There is this propensity towards Ayurveda, naturopathy, homeopathy, traditional Chinese medicine, and to try those things first before going on, God forbid, a biologic or something that has a potentially massive side effect profile, like lymphoma, even if it’s a 1% risk. So there are real challenges with acceptance of medication, acceptance of surgery, like ostomy surgery, and it does date back to some of the mistrust from colonization. And with that, there is this religious or cultural traditional belief around karma. Is this something that we did to ourselves? Is this something that we’re paying for from a previous birth or even from this birth? Is there something we did to deserve this? So there’s a lot of shame and blame and guilt passed on to the patient, and even in pediatric patients, onto their moms. Did they eat something or do something during pregnancy that the child has this? So there’s a lot going on here. It’s really important to understand the cultural elements if we are to make decisions around treatment for patients and working with providers.
Carol Vassar, host/producer:
How can we change the understanding? I’m not from the South Asian culture. How can we change the understanding for people who are on the outside, maybe providers who are treating somebody who is South Asian?
Tina Aswani-Omprakash, CEO, South Asian IBD Alliance:
I think first and foremost, recognizing that this disease, inflammatory bowel disease, is increasing in prevalence and an incidence not just in the US, but across the globe, in South Asia and in the diaspora, so UK, Canada, New Zealand, Australia, all over Western Europe and the US, that we’re seeing massive increases in disease and also very early onset IBD, so young kids are developing this disease, and recognizing that this disease is more severe in our population according to studies, more perianal disease, more fistulizing disease, more pancolitis, and that it looks different from the disease presenting in white Caucasian populations. So really, doctors, whether they’re South Asian or not, and South Asian doctors need this education too clearly as I was describing, taking a bird’s-eye view and really being like, “Okay, more than just the white Caucasian, maybe Ashkenazi Jewish population, are now getting this disease and that it’s hitting young and it can span from a very young age into the elderly population.” So recognizing all of that is the first step.
The second step is making sure you understand that different cultures have different awareness and understanding of this disease, not stereotyping the culture or community to say, “Oh, they’re definitely going for Ayurveda, and they’re definitely trying complementary and alternative therapies,” but really having an open conversation with your patient and with the parent and also recognizing that even adult patients will bring their parent in our community, in our Asian communities, because we have so much respect for and involvement of elders in every major decision in our lives.
I’m in my early 40s, and my mom’s still a part of the picture when it comes to my healthcare decisions, and I own that and I’m okay with it. It’s just the way it is in our community. And when I was 24 and being told I needed surgery, my doctor was kicking my mom out of the room, saying, “You can’t get in the way of her having surgery. You need to just accept that she needs this, and you need to leave the room so I can have a conversation with her.” That’s unacceptable. These are shared decisions that need to be made with the family. And the family isn’t just the spouse. It’s oftentimes parents. You have to recognize that if you’ve got a South Asian patient, you might have an aunt and uncle, cousins in the room, and that’s okay. That’s just the way it is. It’s like My Big Fat Greek Wedding.
Carol Vassar, host/producer:
I love it.
Tina Aswani-Omprakash, CEO, South Asian IBD Alliance:
Literally. And that’s what we have to recognize is this is not just a South Asian thing. It’s oftentimes something that happens in a lot of communities that are very collectivist-oriented rather than individualistic.
Carol Vassar, host/producer:
So, you went public, and it was something that carried, again, a lot of stigma, a lot of discrimination. It sounds like you went public to help others, which is a wonderful and lofty goal, and it sounds like you’re doing that, but how has it affected your life? How has it affected your relationships, going public with your story?
Tina Aswani-Omprakash, CEO, South Asian IBD Alliance:
Going public with my story was a really big decision. I remember in 2014, I had just joined Twitter at the time, and I still remember it was October 2014, and I was telling my husband, “I see some patients talking about their disease with some doctors, and some doctors that I’ve seen for multiple opinions.” And I was like, “I’ve had so many experiences with this disease. I can really talk about this, help patients, but also help doctors understand.” And I remember telling him, “I don’t see anybody talking about these cultural things.” And he knew at that point, after years of therapy, that this was cultural, that this was not just me or my family. And I was like, “I feel like I can really make a difference.” And he’s like, “No, no, no, no, no, Tina. This would be social suicide for us.”
And I sat on it, and he was right. I was still struggling. I didn’t join a clinical trial until 2015 and didn’t come into remission until 2016. But once 2016 rolled around, within six to eight months, I started writing articles anonymously, and they were published, and there was a lot of great feedback on them. And I started running a women’s support group for the Crohn’s and Colitis Foundation here in New York. And then in late 2017, after almost two years of running that support group, the Crohn’s and Colitis Foundation was like, “We want to nominate you as our honored hero for the Take Steps walk here in New York.” I was like, “Okay, what do you mean by that?” And they’re like, “Well, you’re going to have to share your story publicly.” And that’s what happened. And my story kind of went viral to the extent that publications were reaching out, wanting to publish my story, and one of them was behind a paywall, and I was like, “How do I share this?” And they’re like, “Well, you need to create your own website or blog or something.” And that was the birth of my blog.
Carol Vassar, host/producer:
This is amazing because you are educating people, and you are sharing your story. You mentioned that you did get married. You do have a very supportive husband, who I believe I met when we were together recently. I want to go back to your childhood, though, and help to raise awareness for parents who are listening right now. Talk about some of the signs and symptoms that you think parents should be aware of related to a possible IBD diagnosis in their kids.
Tina Aswani-Omprakash, CEO, South Asian IBD Alliance:
This is a fantastic question, and oftentimes we have a private Facebook community via SAIA. It’s called IBD Desis. Desi means South Asian. So IBD Desis. So we have this community and a lot of moms, parents reach out saying, “My child has been diagnosed or even has not been diagnosed, and sometimes they’re showing preclinical symptoms of IBS.” And the ones who have not gotten a diagnosis yet, I often say to them, “One, talk to your pediatrician if they can run blood work on inflammatory markers. Oftentimes, a high CRP, C-reactive protein, or a high sedimentation rate can be indicative of an inflammatory condition like IBD, even for RA and other conditions too, but at least get a baseline in terms of inflammatory markers on your child. If you are noticing that they’re having bowel symptoms in the sense that they might be fluctuating between constipation and diarrhea, that’s more a symptom of IBS, irritable bowel syndrome, or if they’re having abdominal pain, they’re unable to gain weight. If they have whole food coming out in their stool, it means that they’re not absorbing their food.” These are all kinds of symptoms that a patient can have.
And also bleeding. A lot of times we have blood in our stool, so it’s important, and sometimes you can’t even see the blood, so it’s important to, one, talk to the pediatrician about inflammatory markers. I often say that one of the first things that a GI can do with a patient is a stool test to understand their fecal calprotectin. It’s basically like inflammatory markers in the stool. They can also look for blood in the stool using that stool test. They can also rule out GI infections using the stool studies. So it’s important first and foremost to identify symptoms, go to the PCP, maybe see if they can do this kind of blood work, and if there’s any other tests that they might recommend.
Not to really turn away other symptoms. So eye inflammation that’s persistent. Then there’s also joint inflammation that’s persistent. It can be in your small joints, so your fingers and your toes. It can also be in bigger joints like your knees. That’s a key one. If your knees and your ankles are really bothering you, it’s usually a sign that there might be something else going on. So if your son or daughter is sharing those kinds of symptoms. Also, if they have some skin rashes. Don’t just rule it out as a rash. We know diaper rashes can be common and things like that, especially in babies and small kids. But if you see rashes on their arms or especially on their legs or feet, if it looks like a rash or if it looks like a big bump, like a mosquito bite, these can be dermatologic manifestations of IBD, erythema nodosum, psoriasis, hidradenitis suppurativa, pyoderma gangrenosum. I can go on and on. There’s a lot of skin manifestations. Keep an eye. It could be IBD, but it could also be other dermatologic conditions or rheumatologic conditions. Either way, you’ve got to get it checked out, is what I would suggest.
And once the PCP refers you out, then you can really start asking the gastroenterologist, or if it’s another specialty, talk to them about those conditions. But if it’s a gastroenterologist, start talking to them about a stool test. And then, often after they do the stool test, depending on what they’re finding, they might rerun the blood test too and see what the inflammatory markers are, if they have more specific things that they’re looking for. And then the next general step is usually a colonoscopy. And a lot of times they do imaging, CT scans, MRIs. Nowadays, intestinal bowel ultrasound, or intestinal ultrasound, is a non-invasive way to look for inflammation in the bowel as well.
Carol Vassar, host/producer:
When parents go in, they are the advocate for their child. In your estimation, with your experience with your childhood, going through that with a disease that went undiagnosed for so long, how can parents best advocate for their children with their pediatrician?
Tina Aswani-Omprakash, CEO, South Asian IBD Alliance:
I think this is a really good question, and I do want to highlight another point of stigma before we talk about parents advocating. One common question that we get in our community and that I’ve heard many times from parents, one, have I done this to my child by eating something wrong? That’s what people are saying. Two, should I put my child on Ayurveda, traditional Chinese medicine, or homeopathy? Should I just change their diet? Is that enough? And there’s a lot of resistance in our community towards treatment.
I was at a pediatric IBD conference speaking about IBD in the South Asian population. A lot of the doctors were saying, “There is so much IBD now in the South Asian population, and the parents are resisting treatment. That includes biologics, that includes surgery. What do we do? And they want to do all this complementary and alternative therapy.”
I always say to the parent, “Think about this, that children can get traumatized in this process too, if they’re really, really suffering and trying all sorts of non-evidence-based measures. You don’t want them to grow up with stunted growth and not able to gain weight or eat the things that their fellow classmates eat. This is really challenging psychosocially on their health, and you have to think about trauma, especially in the case of children and the trauma that they continue to carry throughout their life.” So I often do mention that to parents, is when you are advocating for your child and you always have their best interest in mind, think about they have to live with this illness for the rest of their life. How do I make this process such that they aren’t disabled for the rest of their life and such that they can grow and eat and put on weight and live as normal as a life as possible? So that’s one thing that I often tell parents, to make sure that they’re advocating in a way that is truly for the longevity of that child’s mental health and physical health.
Carol Vassar, host/producer:
Does it have to be an either/or, or can there be some kind of combination of both the Western and the Eastern ways?
Tina Aswani-Omprakash, CEO, South Asian IBD Alliance:
Great question, Carol. I would say as somebody who’s tried it all, no, really. My family at 24 wanted me to try everything, and I did. You listened to your elders, and you follow them, and you want to follow your doctor too. And it was a tug of war between my elders and my doctor, oftentimes. So I’ve had to find a way to marry both, and I’ve had to learn a lot of hard lessons in that process. Today, I do use holistic measures too, Carol, but I’m very cautious. I work with an integrative medicine doctor who has an MD here in New York, and she’s affiliated with a university center here, and I work with her practice, it’s an integrative medicine practice. I see an acupuncturist who is very, very careful with me, specifically any supplements that are recommended to me are by that MD, and she’s very cautious with what she’s recommending because she’s got to keep in mind my IBD, but also my other digestive and autoimmune conditions, and how I’m going to react.
And the other thing I want to make sure that I spell out for parents is when it comes to Ayurveda and even traditional Chinese medicine, some of these holistic measures, what they do is they might be trying to strengthen the immune system, which oftentimes needs to be modulated or suppressed in a condition like IBD. So they can sometimes cause more harm than good, and we have to be careful, work with a provider who understands that and does not give you any kind of supplements that are trying to boost your immune system, so to speak. Does that make sense?
Carol Vassar, host/producer:
Yes. Yes. So be careful is what I’m hearing. To boil it all down, be careful, get the medical advice, maybe bring in somebody who is familiar with the Eastern traditions as well as the Western traditions. I want to talk a bit about SAIA before we finish up today. What projects, what initiatives are you working on that involve youth or family-centered care at SAIA to make sure that diagnosis and treatment is moving forward for young people?
Tina Aswani-Omprakash, CEO, South Asian IBD Alliance:
So there’s a lot of different things that we have done. We’ve been in existence since 2022, and we’ve done a number of livestream education Facebook Lives, but they actually live on YouTube and our website as well, on higher education, on malnutrition and IBD. This is specific more to the pediatric and youth population that’s trying to get an education, go into the workforce, and feel like they can still live a full life. We’ve also done this work on malnutrition, specifically with pediatric GIs and dietitians to make sure that parents, as well as young adults and teenagers, understand the value of getting good nutrition, because that’s an age when you want to just eat what you want to eat. And also with some of these nutrition sessions we’ve talked about enteral nutrition, we have to remember that exclusive enteral nutrition and even partial enteral nutrition are treatment options, especially for pediatric IBD, and have decent remission rates too. We have done some education for patients on that.
We create digital resources. So people learn differently. Not everybody wants to watch a livestream video. So we will create digital resources that folks can read and understand the key takeaways and understand the key terminology. And then oftentimes we get questions in our community, in our IBDs Desis community, “Hey, I’m trying to understand the different types of remission,” and we’ll explain, “One might be endoscopic, one might be biochemical, one might be clinical, one might be histopathological,” and we’ll explain what it is. So we are doing education via our community, we have the education available on our website, and we are doing the education via social media, and we’ve had in-person events too, in Philadelphia, in India, and Washington, DC, and we have events in San Diego. So we are trying to diversify our efforts and do different things, whether they’re events for patients and for HCPs, whether they’re education done online in different formats. We’re trying to sort of meet the need in different ways.
Carol Vassar, host/producer:
When it comes to young people, since we’re on that topic, what advice would you give to young people from marginalized communities dealing with a chronic illness and/or cultural stigma? It doesn’t have to be IBD. Or maybe want to become patient advocates themselves, like you. What advice would you give them?
Tina Aswani-Omprakash, CEO, South Asian IBD Alliance:
There’s a number of things that I would say to a young person who wants to become a patient advocate, whether it’s IBD or not. Just realize that this might be a really big game-changing decision for you and for your life, and that’s okay. We go through periods of wanting to go under the covers, so to speak, and disappear, and I went through that too. But know that the work that you are thinking to do or the work that you want to do can have such a huge impact on your community and on your age group, your socioeconomic status, that it’s really important to keep at it and keep doing it.
When it comes to family or community, who are like, “Why are you doing this?” I don’t think we owe a response to anyone. I think it’s important to do what feels right to us in our hearts and know that we are doing this for the greater good, whether they see it or not. Now, oftentimes, most people do come around and they respect what it is that you have done for the community. That’s what I’ve seen over the last seven years, is that you can really make a difference. One voice can really make a difference and one voice can galvanize an entire community. That’s what I’ve seen. I don’t profess to speak for my entire community, but my goal is to empower everyone to try to speak up if they feel comfortable so that we can together empower the entire community.
Carol Vassar, host/producer:
Tina Aswani-Omprakash is the CEO of the South Asian IBD Alliance, known as SAIA.
MUSIC:
Well Beyond Medicine.
Carol Vassar, host/producer:
Thank you so much to Tina Aswani-Omprakash for sharing her very powerful story and her insights with us today. And thanks to you for joining us on the Nemours Well Beyond Medicine podcast.
Thought-provoking conversations centering on children’s health are what you’ll hear each time you listen to the Well Beyond Medicine Podcast. Remember, you can find all of our podcast episodes on our website, NemoursWellBeyond.org. That’s NemoursWellBeyond.org. You can also find episodes on your favorite podcast app and on the Nemours YouTube channel. No matter what platform you choose, please be sure to subscribe, review, and share.
Our production team for this week includes Cheryl Munn, Susan Masucci, Lauren Teta, Sebastian Riella, Steve Savino, Britt Moore, and Alex Wall. Join us next time as we dive into the power, the challenges, and the stigma of breastfeeding during National Breastfeeding Awareness Month. Don’t miss it. I’m Carol Vassar. Until then, remember, we can change children’s health for good, well beyond medicine.
MUSIC:
Let’s go, oh, oh, Well Beyond Medicine.
