In our final interview with our 2019 DiabetesMine Patient Voices Contest winners, we're thrilled to share the story of a high school student from Canada who's a passionate advocate with a T1D endocrinologist dad.
That's right, this father-and-son pair from the Toronto area both happen to be living with type 1 diabetes.
Please say hello to contest winner Ethan Parikh and his dad Dr. Amish Parikh. Ethan's currently a high school junior actively involved in public debate who has a keen desire to inspire and encourage future generations.
Meanwhile, his dad is a practicing endocrinologist at the Mississauga Halton Local Health Integration Network (LHIN), and is also a founder of the collaborative non-profit T1D Think Network that brings patients and providers together for the benefit of the D-Community.
This is actually a first for us at the 'Mine, hosting a father-son pair with T1D at our annual DiabetesMine Innovation Days, coming up on Nov. 7-8 at UC San Francisco Mission Bay. Officially, Ethan's the scholarship winner here, but with him just marking his 16th birthday this past weekend on Oct. 19 (!), he'll be accompanied by his father who had applied separately and is a strong voice in his own right.
Without further ado, here's our recent interview with Ethan and Amish...
Father and Son Share Passion for Type 1 Diabetes Advocacy
DM) Thank you both for your interest in our innovation program! Can you start by each sharing your own experience being diagnosed?
Ethan) I was diagnosed about three and a half years ago when I was 12 years old. The day was very memorable for me. I had a semi-final hockey game that day, and prior to that I’d been thirsty and had some other common diabetes symptoms before the diagnosis. I had played pretty hard, and we ended up winning 3-2. But afterward when I got home, I wasn’t feeling too well. My mom and dad, with him being an endocrinologist, wanted me to check my blood sugar. It just read “Hi.” I was admitted to the hospital that night, and they diagnosed me with type 1 diabetes.
Amish) I was 14 and it was November 1989 when I was diagnosed. I was a lot sicker at my diagnosis than Ethan was, and was in the hospital for about a week – though that was typical back then, to be admitted for much longer. Most of the teachings occurred as an inpatient.
Amish, did your own type 1 prompt you to become a doctor? And how do you handle the crossover to D-dad?
Amish) For me, I think that I did know that I wanted to do medicine even before being diagnosed with type 1 diabetes, but I think my decision to do endocrinology was impacted a lot by my having it. Obviously, I have helped Ethan as much as I can. But when you’re an endo who has type 1 diabetes, and you have a son with type 1 diabetes, I think you do play a bit of a dual role. You have to balance everything -- being just “Ethan’s Dad” and what you personally know firsthand about this condition with what you know on the medical side.
Certainly, a lot has changed in the almost three decades between your diagnosis years…
Amish) Yes, it certainly has changed. Back then, as anyone will tell you, the tools we had for managing diabetes were very different. That included the types of insulin, and tools and types of insulin delivery devices. Pump therapy wasn’t really heard of for most people at that point.
I started out on two injections and went up to four injections per day. Now I’ve seen how technology can adapt over time and improve quality of life for people with type 1. I have worn pretty much every device that’s out there, all the pumps and CGM systems. Part of the reason I’ve done that is because sometimes as a healthcare professional, wearing the different devices can give you a bit more insight when working with patients on what may or may not work for them specifically. Having personal experience versus theoretical experience can help give potentially better advice. Each device has its own advantages and disadvantages, and I think being exposed to all of that is good.
Ethan) I currently use the FreeStyle Libre Flash Glucose Monitoring system, and am not on a pump but using injections. I also use phone apps and have found some that I really do like – the Libre app, and plenty of carb counting apps that I use quite a bit. This is very helpful when eating out, or in my school cafeteria where you often don’t really know what’s in (the food).
Ethan, can you tell us more about how you handle diabetes at school?
Ethan) I’ve been lucky in being at the same school for the duration of having diabetes so far. I have a great team of nurses to help me, and especially in the first few months when I was getting used to this new lifestyle, they were very supportive. My family, too, has always been very supportive – especially with my dad being an endocrinologist. I also talk with my head chef at school, and he gives me schedules of the meals so that I have an idea of what’s being served.
What about your involvement in public debate, with diabetes in the mix?
Ethan) Public speaking and debate is an interest of mine, so I joined the debate club in eighth grade. We went to Nationals in grade nine, in May 2018. I’ve enjoyed sharing my point of view in a way that’s personal and persuasive. I am the only one on the debate team with diabetes, and that’s difficult because you can’t always ask someone there for advice. It’s very personal as to how your blood sugar react when you’re in different situations.
When I was diagnosed, I developed a routine of checking my blood sugar before I had a competition. When I’m nervous, I have lower blood sugars. So I need to keep that in mind, especially when debating five or six rounds in a day. I’ve been able to adapt and learn. I do plan to be in as many competitions as I can, during grade 11 and 12.
Is that what led you to applying for the DiabetesMine Patient Voices Contest?
Ethan) Yes, it is. I believe that being a strong voice – especially in the diabetes community – can be extremely powerful. That’s why I am excited to be a part of the conference. I do think I bring a unique perspective, as a young generation effective public speaker, advocating for people with diabetes all around the world, to potentially become advocates on their own for positive change.
Why do you think your POV as a teenager with diabetes is so important?
Ethan) I think a lot of the time, people underestimate the power that youth have: in communicating with each other and finding a point of view that many don’t have. Personally, I’ve met so many peers who have provided insights into various technologies and different things. I've gained a broader perspective. And if youth are recognized, they will jump at the opportunity to make change in the diabetes community.
The most important thing is that youth are eventually going to be the adults of the future, and their involvement is pivotal. In the future, we’ll be making these executive decisions (and impacting) where companies are going on technology. It will help us make better decisions in the future if we've been actively involved in what companies are doing.
Amish, can you also share more on the T1D Think Tank Network?
Amish) A couple of years ago, some colleagues and I founded this non-profit network, a unique collaboration between patients and healthcare providers that focuses on type 1 diabetes. We provide expertise and guidance for people with diabetes, and we do that by creating a community of experts. The goal was to get patients and healthcare providers together on an equal playing field.
In traditional healthcare settings, we knew for a long time that the patient voice was under-utilized – especially when you talk to people with type 1 diabetes. Patients have so much to add to the conversation, so we realized getting them together would allow not only for better communication between the two, but also for improving quality of life for people with diabetes.
We’ve done insight sessions, where patients and providers talk about concerns and frustrations they have around T1D. We encourage an organic, grassroots level of conversation where everyone can learn from one another. We've also created videos, and a conversation guide, available on the website, that talks about key things discussed at a clinic visit. People can use it as a sort of template to make sure their concerns are addressed. Everything we do is based in science, so we’re not a fundraising or patient advocacy group; we’re a bit different that way. I have not heard of any organization like this anywhere, and that’s part of the reason we created it.
How about affordability and access issues?
Amish)We can have the greatest technology and devices, but behind all of that technology, is a real person. We can’t forget that human factor.
Ethan) Ultimately, I’d like to see a world where everyone with diabetes can afford and access whatever treatment and technologies they need. While it’s evolving, it is no use if people can’t get it. I personally have not faced these issues, but I’ve met many who have. The cost of insulin has risen over the years, and I’ve met people who can’t afford technology like insulin pumps or CGMs even if they have insurance.
Last summer as part of a service trip, I went to Kenya and went to health clinics to see how diabetes is managed there. I saw a line of sick people, many with diabetes, and most health clinics didn’t have glucose meters, no fridges, no way to safely store insulin. The global community needs to work on that, making sure people have access.
On the positive side, what do you think is exciting about changes in diabetes care?
Amish) This is a great time to be in the type 1 diabetes sphere for several reasons. Patients are taking a lot more of an active role in the treatment and management of their diabetes. They are trying to learn more, testing out new technology and giving feedback, and using social media to connect with other people with type 1 diabetes. They are becoming advocates and change-makers in the diabetes sphere. That’s how change happens: you get a motivated group of people who want to change the paradigm, and you get those key stakeholders talking and acting.
Where do you both turn to for peer support?
Ethan) When I was first staring out, I met people through some online organizations who I could connect with. I’ve done quite a few activities with the “I Challenge Diabetes” Canadian non-profit, and I’m also part of a chat group with people from all around Ontario. They do an array of sharing on what works for them and the emotional side of diabetes, and how to manage during exercise and sports. I’ve learned a lot from those groups, about how other people live with T1D. I don’t find those to be the same kind of conversations with people who don’t have diabetes.
I have also done diabetes camps at various universities, where children with diabetes can come and do sports during the day but learn about taking a break and checking in on themselves. I’ve been able to communicate my experiences and what works for me, and inspire some kids to step outside their comfort zones to realize that no matter what sports you want to do, it’s achievable. Diabetes shouldn’t be a barrier. That’s part of the message I was there to convey, and it’s one of the messages I’ve committed to sharing.
Amish) There is a huge mental and psychosocial aspect of having diabetes. When someone has a son or child with diabetes, it changes the parental relationship, right? If you’re an endocrinologist with type 1 who has a child with diabetes, it changes it even more. There is a fine balance between juggling all those different hats you need to wear. Ethan is an individual person, so he has to learn what works for him and doesn’t, and not let having type 1 deter or detract from what he loves to do. It's quite more ironic that this all started for us with Saturday hockey, and how sports has always been such a big part of his life. We often talk about that.
Thank you both for your passion, and for applying to be part of our upcoming event. We look forward to welcoming you to "DiabetesMine University"!