- Two million Americans live with Type 1 diabetes.

That's according to the American Diabetes Association.

Next on "Health Matters," how this autoimmune disease impacts children and families in our region.

(light upbeat music) Welcome to "Health Matters."

I'm Aaron Luna.

November is Diabetes Awareness Month.

With many types and presentations, it's often misunderstood and generalized.

Tonight, we're focusing on Type 1 diabetes.

Joining us now, Dr. Carol Wysham, endocrinologist at MultiCare Rockwood Clinic and Clinical Professor of Medicine at the University of Washington.

Fondra Magee, a Volunteer and Advocacy Team Chair for Breakthrough T1D Pacific Northwest.

And Shelly Blomgren, Community Outreach Coordinator for STIX Diabetes Programs.

And, Dr. Wysham, we'll start with you tonight.

In the simplest way possible, tell us what Type 1 diabetes is.

- Well, Type 1 diabetes occurs when the immune system has been triggered to fight off the insulin-producing cells.

And after approximately 90% of them are gone, there is a development of high blood sugar that happens because of a total deficiency of insulin.

- And what does insulin do for our bodies?

- [Carol] I like to think about insulin as being like a key that's necessary to open the door to allow glucose to go into the cells where it acts as a fuel for every cell of our body.

- So it's really important?

- [Carol] It's essential, it's absolutely essential.

- We also hear a lot about Type 2 diabetes.

What is the difference between Type 1 and Type 2?

- [Carol] Well, they're the same in one respect, and that is their blood sugars are high, and it's both related to a deficiency of insulin.

But the main difference is Type 2 is not autoimmune, and they still make insulin.

They just don't make enough for the demands of their bodies.

Whereas patients with Type 1 diabetes make little or no insulin and are absolutely dependent upon insulin for life.

- What are the long term effects of Type 1 diabetes if there's no treatment, if there's a lack of treatment?

- [Carol] So prior to the availability of insulin, people lived an average of perhaps three years and died very miserable deaths related to just their body could not get the nutrition that they needed.

Once the insulin was available, obviously, life expectancies increased, but we began seeing the risk of long-term high blood sugars in the formation of complications, eye problems, kidney problems, problems with nerves.

And now we're seeing increasing numbers of heart attacks and strokes in patients with Type 1 diabetes.

- So it's an ongoing?

- [Carol] Yes, yes.

So controlled blood sugar, keeping the insulin, you know, at the right time in the right amount is really important for prevention, both the short term life-threatening risks as well as the long-term which could eventually be life-threatening as well.

- And we were talking about this earlier.

It's the way that it's been being treated seems to have grown leaps and bounds.

But there's still so much more to do.

- [Carol] Oh, well, you know, everybody who has Type 1 diabetes has been told by somebody that there's gonna be a cure for diabetes.

And that is our ultimate goal.

And I know Fondra is gonna have a lot more to say about that.

But we have an amazing amount of tools available for our patients with Type 1 diabetes to allow them to get near normal glucose control as long as they get the insulin, they have access to technology that allows a pump to deliver insulin based upon what's going on in their body with their blood sugars.

- We'll talk more about that in just a few minutes, but right now we want to introduce you to a Spokane girl and her family living with Type 1 diabetes.

We caught up with her mom after school recently, and they gave us a glimpse into what it's like living daily with this disease.

Margaux Forestrum is adorable, and, she'll tell you, she gets along with everyone.

- I'm outgoing and sweet and kind, so people kind of like me as a friend.

- [Aaron] Along with making people smile, she also likes to color.

- [Margaux] My mom says I'm a really great artist.

- [Aaron] Rave art reviews from mom are just part of being a normal kid, right?

- I'm like a normal kid, but it's also kind of different at the same time.

- [Aaron] That's because Margaux was diagnosed with Type 1 diabetes at three years old.

- Yes, it's hard at times, and sometimes my blood sugar is a roller coaster.

(Margaux giggles) But other than that, it's like being a normal kid.

But just a little... - [Aaron] Yeah, like she said earlier, just a little different.

And while her diagnosis didn't come as a surprise, her dad also has Type 1 diabetes, her mom Adria says it took Margaux's life being in danger to get the care she needed.

- They finally listened and took her blood sugar, and it was so high the meter couldn't even read it.

And she was well into DKA and almost died.

We spent the next five days in the hospital for her body to regulate itself.

She had to be on a drip of insulin and glucose at the same time to help regulate and just get her back to what would be considered normal.

- [Aaron] While Margaux was being treated, mom and dad had five days of diabetes education classes and meetings with multiple doctors to learn how to keep their now diabetic toddler alive.

- And it's very different than caring for an adult with Type 1 diabetes because a child's body is constantly changing and growing.

- [Aaron] Five years later, the Forestrum family has found their rhythm, a routine that considers diabetes with every step.

- Being up all night to check blood sugar, being exhausted during the day to check blood sugar.

First thing in the morning, we check Margaux's blood sugar to give her insulin, and then we consider what she can or can't have for breakfast, where her blood sugar's at and where it's headed.

- [Aaron] Then it's off to school.

- [Margaux] There is a great nurse at my school who does take care of me.

- [Aaron] That nurse is in constant contact with mom throughout the day, giving her updates about Margaux's blood sugar and insulin needs.

- For the most part, I only need to talk to the nurse about twice a day.

Usually around lunchtime after recess we'll discuss how the day has gone up to that point and decide together how much insulin she needs.

- [Aaron] At three, Margaux struggled to understand what was happening in her body and how to describe it.

Today, she has the words.

For example, here's what she says it feels like to have low blood sugar.

- Being low kind of makes you feel really hungry.

And the second you see a bag of candy, you just wanna chow down on it.

- [Aaron] And for only being eight, she realizes Type 1 can be an extra challenge on top of trying to just be a kid.

- I'm still like a normal kid.

I can still learn fine, but it's also kind of hard to focus when I'm high or too low.

- [Aaron] Which is why she's also learning how to care for herself into adulthood.

- Well, at first, yes, I was scared, and also for the parents it was really scary.

(Margaux giggles) But I wasn't really...

I was brave.

Yes, I was a little scared, but I made it through!

- [Aaron] Diabetes has more than a physical and emotional impact on this family.

It also strains the budget with the high cost of insulin and other supplies.

- Sometimes we just can't afford to do things because insulin and making sure we have money for that is priority.

It's hard to save because insulin is our priority all the time.

We don't have a choice.

They need to stay alive.

- [Aaron] Adria wants her daughter to grow up without being ashamed of her condition, hopeful that Type 1 diabetes won't hold her back.

- She's a kid first, she's a diabetic second.

- [Aaron] And Margaux?

She has a message for other kids just like her.

- Well, the diabetic kids out there, that you are not alone, that people are there for you, and you never have to be worried or scared 'cause people got you.

Got your back anyway.

- Fondra and Shelly, your organizations, they help support families like Margaux's.

And, Fondra, how does Breakthrough T1D help families who are just learning of the child's diagnosis?

That's gotta be a tough thing to digest if you're just receiving that news.

- Absolutely, it's very tough.

Breakthrough T1D is the leading Type 1 diabetes research and advocacy organization in the world.

And we are just thrilled to be here.

There's so many things our organization is doing, it's just hard to put into words.

But I think the best thing that I can tell you, our purpose really is to make life easier for those that are living with Type 1 diabetes while we are driving towards a cure.

For my son, that has meant so much.

I can tell you that, when we were diagnosed, my son was seven years old.

And we were in the hospital for five days, and we received a bag of hope, which was a blue backpack, I still remember it, that was given to us by this organization, Breakthrough T1D that was originally JDRF.

And then it was some educational materials, and there was some books for children about Type 1 diabetes.

And there was a friend, probably gonna cry, but there was a friend in there for my son, and it was Rufus, Rufus the Bear.

He was Rufus the Diabetic Bear, the bear who had diabetes.

And he had patches on him to show my seven-year-old where he would inject insulin into his body and give himself shots, and he could also give shots to his bear.

And he slept with that bear for years.

I mean, we still have it.

Shortly after that, someone from the organization Breakthrough T1D who's a mom, a volunteer.

Our organization is...

Volunteers are critical for our organization.

I don't think we would have an organization without volunteers.

And she came and invited me to a walk that was gonna be at Riverfront Park that we have every year.

And it's a fundraiser because part of what we do as the leading funder of Type 1 diabetes research is fundraisers.

But she said, "Don't bring money."

She said, "I just want you to come."

And I remember going two months after Carson was diagnosed, and there was hundreds and hundreds of people there.

And seeing children that have been diagnosed with Type 1, teenagers, adults living with Type 1 diabetes and walking.

And I cried the entire three miles.

But it wasn't really for sadness.

It was a joy because I felt like for the first time that I wasn't alone and that other people knew what I was going through.

And that's the beauty, I think, of our organization is that, yes, we raise money, critical funds for Type 1 diabetes research and we advocate, but we also bridge that gap with the community and we find a new family.

- It's important to have that community.

And, Shelly, how does STIX Diabetes Programs work with Type 1 kids and their family?

It's kinda that outreach to say you're not alone.

- It is, it is.

And, you know, I call STIX a cure for the soul.

You know, where Breakthrough T1D is looking for a cure for Type 1.

We have two camps for kids.

We have a camp for kids, a weekend camp, Twigs, for ages six to eight.

And it's kind of their introduction to camp and kind of gets the kids together.

And then we have a week-long camp for kids ages nine to 16.

And it's great because I remember when my kids were first diagnosed hearing about STIX and it's this thing to, I mean, my kids were diagnosed too young at that time to go to camp because they were diagnosed before Twigs was around.

But, you know, looking forward to being able to go to camp kind of gives these families something to look forward to.

And we also have an amazing community outreach program which kind of bridges that gap in between camp.

And so we provide support for families kind of throughout the year with different activities.

And we have caregivers nights, and we have family outreach programs, just kind of get-togethers.

And, you know, you never really understand, you know, you have this child who's diagnosed with Type 1, and it's like suddenly your friends don't understand what's going on.

And when you get together with others in the community, suddenly you have people who understand, and you have this camaraderie.

And that's kind of what STIX does is it brings people, yeah.

- And you both kinda mentioned the importance of community in these programs, knowing that you're not alone in this fight and then showing your children that they're not alone either, that there are other kids out there who are dealing with the same hurdles and that they can overcome 'em together.

It sounds like that's kind of the main goal when you're talking about working with the soul, working to find a cure.

And especially for new parents who are just experiencing that, what's it like, you know, finally realizing that, "Hey, there are other people out there helping"?

- I mean, when you see, 'cause my kids have been diagnosed both for about 11 years now, and when you see a new family come in and they see other kids living, thriving with diabetes.

And sometimes they just sit back and they don't have words.

Sometimes they cry, sometimes they just give you a hug.

I mean, just seeing others living with this disease is so important.

And the kids getting together.

It's funny because they don't even talk about diabetes a lot of the time.

They just interact and they just know.

I'll never forget one of the first time, 'cause my daughter was diagnosed at 25 months, and I wouldn't have thought that she would've recognized another child with diabetes.

And she latched onto this little girl who was checking her blood sugar just like she was.

And, I mean, she's an adult now, the same person, and that's still her person.

You know, my daughter's now 13, and she still looks up to her.

She still talks about her.

And, you know, now my daughter also can be a mentor to other kids.

And, again, you don't even have to talk about diabetes.

You don't have to say...

They don't have to talk about technology, they don't have to talk about blood sugars, they don't have to talk about school.

But just knowing that others are beeping, others are having to do the things.

Just seeing others living with the disease is so important.

So... - It makes it seem as if that's normal and that's just how things are.

Nothing to be ashamed of, nothing to be different.

Dr. Wysham, what are some things from a scientific standpoint that would help people better understand Type 1 diabetes and, you know, hearing what families cope with on a daily basis for someone who doesn't, other parents who don't know what it's about?

- Yeah, I think that's a really good question.

The important issue is that people assume diabetes is a problem with willpower.

"Oh if you just ate better, "you can get rid of diabetes."

And people with Type 1 diabetes hear this all the time because people are lumping and not splitting and understanding.

And, you know, you talk about children, but I take care of adults, and I've had, you know, people in their 90s with long history of Type 1 diabetes, some of which were diagnosed when they were 60.

So, you know, this is a problem that's really important for families.

But, you know, it goes the lifespan in terms of, you know, people dealing with the difference between Type 1 and Type 2.

As I explained before, you know, Type 1 diabetes, autoimmune condition, total insulin deficiency, totally dependent on life.

If they take the wrong amount of insulin when they eat, their sugars can go sky high and they feel terrible.

If they take too much, they can go life-threatening low.

And it is, I'm sure you can relate, a disease where it's a rollercoaster sometimes.

The blood sugars are up and down.

And especially before technology, you really didn't know what was gonna happen in the next 10 minutes to your child's blood sugars.

And so the main difference is insulin is absolutely critical, essential for these people to live.

Diet is helpful, but it is not gonna cure or take away diabetes.

People with Type 2 diabetes, early on, yes, you can reverse it, but, you know, they are treated with other medicines, and oftentimes insulin is only necessary in the latter stages of the disease.

- I know we talk about management.

We also talk about a cure.

How close or what is the sentiment behind if we're getting to a cure?

No one has a crystal ball, we can't tell the future.

Are we looking for a cure in our lifetime or are we looking at advances in management as a best option?

- So it's going in parallel.

You don't wanna wait for the cure and not have these technological advances available to markedly improve.

You know, the majority of patients, their quality of life is just so much better when they have pumps that are integrated with sensors, and their pump is taking care of their minute-to-minute blood sugar control.

But everybody wants a cure.

And I would say, again, the ultimate goal is for somebody not to get diabetes.

And there's great research going on in prevention of diabetes, early identification of problems and actually giving medications to prevent or postpone the presence of diabetes.

But the advances that they've made to artificially make islet, the cells that make insulin called islet cells, and implant those into the human body.

The advances have happened absolutely incredibly in the last five years, I'd say.

You know, up to that point it was like, "Yeah, this is eventually what we'd like," bu the changes were so small that, you know, I wasn't.

But I am absolutely convinced that we're going to have this available, you know, within our lifetime.

I'm not gonna say how many years.

But just yesterday was a report of the first human that had received her own islet cells that had been made from her stem cells.

I read the report, it didn't indicate it, but I suspect that this woman did not need immunosuppression medicine, didn't need medicine to lower their immune system.

And so all of the hopes and dreams of a cure for somebody who already has diabetes is that close.

- We can't talk about a cure without talking about Breakthrough as well.

And, Fondra, what are your thoughts when you hear something like that?

- You know, for everybody that loves a person with Type 1 diabetes and for Type 1 diabetics themselves, we can't wait for the day when Type 1 is Type None.

And it's what we dream of.

Breakthrough T1D... For Breakthrough T1D, it's our North Star.

A cure is our North Star.

Breakthrough T1D for the last 50 years since our organization's inception has led the way for the search for better treatment and for cures for Type 1 diabetes.

And, you know, we are just looking forward to that day because we know it's gonna come.

I can tell you that in the research that Breakthrough T1D is doing, over time, that research has led us to breakthroughs with, like you're talking about, technology and with therapies that are making life better for Type 1 diabetics and also helping them to lead healthier lives and longer lives.

Which is so important.

I mean, these are our kids, these are people that we love.

So, for instance, when my son was diagnosed, he was poking his finger, what, 10, 12 times a day?

And I remember thinking back then, "This is kind of archaic.

"Are we still poking our..." And this was back in 2010.

Today, he has a continuous glucose monitor, which is a wearable device that continuously reads his blood glucose.

Instead of giving himself shots, he has an insulin pump.

And the continuous glucose monitor actually talks to the pump and is acting as an artificial pancreas really to help give that automatic insulin to him when he needs it and how much he needs it.

And we're not quite there yet.

We have a lot to do.

But that is a huge breakthrough for Type 1 diabetics.

And so we are really looking in that direction.

And if I could mention one more thing, it's very exciting.

In November of 2022, the FDA approved the first disease-modifying therapy, which is actually delaying the onset of Type 1 diabetes by up to three years.

Which is huge for us.

And it's called Tzield.

So we're very excited about that because this is opening the doors so wide for us.

There's cell therapies, multiple cell therapies that are in the pipeline.

And I really, you know, when Carson was diagnosed, I hoped for a cure.

But I can honestly tell you that we are on the path to a cure.

And it's not a matter of if, it's a matter of when.

- And as parents with children who are working through this, we talked about the physical and emotional as well.

What about the social impact, the importance of knowing that there are other children out there that are checking their monitors, they're doing the same things, they have the same equipment on?

Why is that such a huge factor in this?

- Just knowing that they're not alone.

Because I know it's such a lonely disease.

Yeah, I mean there's so many kids with Type 1, but, yeah, they just feel so alone.

'Cause my daughter for the longest time was the only one in her class with Type 1.

And she hated when kids would ask her questions, when kids would...

I mean, yeah, it just felt very lonely to her.

My son just kind of was more, I mean, he didn't like it either, but, yeah.

So getting them together at STIX and the outreach events definitely kind of helped.

And camp always, always rejuvenated them for the year.

I mean, there's talk of camp in my house year round.

They always wanna know what's the theme for the week, what's... Yeah, 'cause that's big.

It's, "What are gonna be the themes for the week?

"What costumes can we buy?"

Yeah, it's really big.

So when these kids come together at camp, they all have the same thing.

You know, everybody beeps.

That was a shirt this year that they could buy, yeah.

- And I'll just add, it's a horrible disease, and it's 24/7.

You never get a break from it.

Parents, you know, stay up at night, waking up every couple of hours.

It's gotten a little better with our continuous glucose monitor.

But we have a fear of our child dying.

I'm just gonna be blunt.

And it is really hard, and it's very difficult to do this disease alone, and it can be a very, very lonely thing.

And I'm so thankful for organizations like Camp STIX and Breakthrough T1D.

I mentioned the walk and the bag of hope.

We meet families at the hospital actually and talk to them.

If they wanna mentor, we match them up with somebody who's kind of been down this road a little ways to get their feet on the ground.

We have Easter egg hunts, we have a lot of get-togethers.

And one of the things that I think that our organization does so well is advocacy.

And we go tell our stories because that's our most powerful tool is to tell our personal stories of the cost of diabetes, the financial, the emotional, the medical cost of diabetes.

And we talk to our lawmakers, we talk to members of Congress.

Every two years, we have local kids, and we're talking about our community here, local kids that can apply, applications open right now.

If you're Type 1 diabetic between the ages of four and seven, I'm sorry, four and 17, you can get chosen as a delegate for your state and go to Washington, D.C. and actually speak on Capitol Hill.

We have local meetings with our congressmen, our U.S. senators and congressmen right here that we invite our families to come to and tell their stories.

And it is so powerful.

And I think that coupled with, you know, the social aspect, but also the advocacy that we're able to do, I think it gives us purpose, and it gives us a reason to be here and just a family that we never wanted, to be honest, because nobody wants Type 1, but it's a family that we've grown to love.

And, honestly, I know Breakthrough T1D has been a lifeline for our family.

- That's great, that's great.

We're running a little bit short on time, but, as we discussed before, these programs always need volunteers.

So if anyone has it in their heart to reach out to these programs, I'm sure they're more than welcome to kind of contact those programs directly, either online or find a friend who knows something there.

thank you to all our panelists for sharing their expertise.

Dr. Wysham, Fondra, Shelly, thank you for sharing your personal experiences.

If you wanna share this episode of "Health Matters" with friends and family, You can find it online at ksps.org/healthmatters.

and we'll be back next month with a look at cancers and health conditions on the rise in millennials.