MoreThan a Diabetic: Eritrea Mussa Khan

This content originally appeared on Beyond Type 1. Republished with permission.

By Makaila Heifner

Eritrea Mussa Khan is 28 years old and has had type 1 diabetes for 18 years. She lives in Dallas, Texas with her husband where she works full-time in application development training for a large school district.

Recently, Eritrea joined the team at Diabetics Doing Things as a Content Creator and is a co-host on the podcast. Their new 4-part series “More Than a Diabetic,” features 15 members of the diabetes community who are all people of color. This series focuses on important topics like medical racism, representation in the diabetes community, and how we can collectively as a community do better to support Black and other people of color with diabetes.

Eritrea recently sat down with Beyond Type 1 to discuss the podcast, identity, and diabetes.

BT1: Do you remember what it was like when you were diagnosed? Had you had any prior knowledge of type 1?

Eritrea: No, I didn’t know anything about diabetes at all. I was eight, so I was pretty small. I remember that I sent my parents home when I got diagnosed because I was more worried about my siblings than myself and being like, “Hey, my mom has to get up early tomorrow and take my brothers to school. She has to go home and get some rest.” I took charge of a lot of my own care, but also my parents were foreigners to the country. Their understanding was limited because of language barriers so it was easier for me to take charge and be the translator, not just for them, but for myself so that I could understand everything firsthand. If I needed to take care of myself, I could do that. I was very much a little adult about it.

How did you become involved in the diabetes world and activism?

I started going to diabetes camps when I was really young. I was diagnosed in 2002, and I went to my first diabetes camp that same winter. The next summer I started to go to Camp New Horizons here in Texas with my brothers because it was offered to diabetics and their siblings. At 13, you can become a counselor in training (CIT), and so I became a CIT and then my brothers all grew up going to camp as well so then they became CITs. It kind of became a family thing. When I turned 18, I became a counselor and then I started volunteering every summer. I have a lot of friends with diabetes. I went to a lot of camps so it makes sense that I made a lot of long-lasting relationships. As I got older, I just tried to volunteer my time here and there. Last year in 2020 I met Rob Howe at a Diabetes Meetup in Dallas (pre-pandemic) and later got really lucky to be offered an opportunity to create content over at Diabetics Doing Things.

Do you ever feel burned out while working in diabetes?

I’m lucky enough that I don’t work in the diabetes space full time, and I don’t want to say never but I just feel it would be so hard. I know some people who work full-time in diabetes and seriously huge “Kudos,” because I feel like we already work full time in diabetes. There’s no vacation from this thing! I do definitely go through some burnout. I have a therapist. This is not a humblebrag. I am not okay all of the time, it’s hard out here. But somehow, I manage. I try to go for walks a lot so that I can really just look around the earth and realize that it’s so much bigger than just me and my experience and what I’m going through in my moment. I try to eat good food and enjoy as many small things as I can. It’s the small stuff that makes up the big stuff.

How did you come to create “more than a diabetic” and why did you feel like the space was so necessary for the community?

When Rob and I started talking about me working at Diabetics Doing Things, the conversation was really around doing things differently. There is a type of aesthetic or type of face of diabetes. That face is very common within the online community and I see it all the time, or even faces that look like mine, which is the very consumable Black girl: light skin, curly hair, very cute, blah, blah, blah. And I hate it. It’s ridiculous, Black people and people of color exist in all shades, shapes, sizes, types of diabetes. And their experiences should be talked about, represented appropriately. I wanted to create a space where people were going to have real conversations without mincing words to spare feelings. I thought that it was important for us to be honest, to be clear, and to have these conversations out in the open instead of continuing to talk about having these conversations. Something that’s always really bothered me about how systems of oppression are created is that the conversations about changing them are always being had by the same people who created the problem. It really felt like it was time for these conversations to be centered around the people who are impacted by the societal impact of erasing BIPOC experiences. So, that’s what we did.

When do you feel most empowered and who in your life contributes to that?

I always feel supported at home. I have the best husband ever who lets me go on hour-long rants about things and tells me, “Hell yeah.” Having the space and sometimes the bravery to say things that might make some people uncomfortable is crucial. I also work somewhere really great, and Rob is a really great person to work for. I always feel like Diabetics Doing Things is here to tell the truth, even if those truths may be a little bit uncomfortable sometimes.

Do you have a message for anyone that’s struggling with discrimination or racism?

I think we’re all struggling. I think every single person is struggling. But maybe something we could all think about more is just being intentionally kind. There’s a difference between being nice and being kind. We all need to be a little bit kinder and think more about the other person’s human experience. We need to be a little bit more intentional with that kindness. If we are being asked to speak somewhere, questions need to be asked. Who else is speaking? Am I taking up space that could be for someone else? Are all groups being represented here appropriately? Are we making this accessible for everyone?

It’s about being kind, being intentional, opening up doors for other people other than just ourselves. I know that we all want to get ahead, I know we all want to do well. That’s not what I’m arguing. I’m just saying that we can’t all do well when we’re ignoring the needs of other people in our community. You cant be an advocate for diabetes and then ignore BIPOC with diabetes or LGBTQ people with diabetes or type 2 diabetics. We all have diabetes. We all need to help each other.

What’s next for you? The podcast?

Diabetics Doing Things is still doing takeovers on Mondays. We do about two takeovers a month. It’s called “Doing Things Day,” and we hand over our account to somebody somewhere and they take us through a day in their life with type 1 diabetes. We’ve gone to places like Palestine, Lebanon, London, Georgia, Tennessee. We get to see a sliver of a moment in someone’s life, just a day. I really enjoy these takeovers because they allow us to go all over the world. It’s going to be really awesome. We’re covering some really cool new people in March.

For now, I know I am doing some more producing at Diabetics Doing Things, and I’m not really going anywhere. I’ll be here working on stuff, brainstorming what my next thing is.

I’m also working on a project that I’m really excited about. I’m looking for diabetics in the media. I love projects like these because I so enjoy going down a rabbit hole. Catching up on Steel Magnolias and Scrubs has been a treat. I’m really excited for what 2021 will bring to Diabetics Doing Things and what season two of More Than A Diabetic will look like.

Any last thoughts?

For anybody listening to any of these episodes, please just listen. That’s it, have an open mind. If you find yourself feeling something while listening, I invite you to lean into that feeling and explore it. This is not about just one singular person. What the ultimate goal of More than a diabetic was is to shed a spotlight on an issue that impacts all of us. It’s about a shared community experience that so many people who look like me, and who don’t look like me, have gone through.

Source: diabetesdaily.com

The New Type 1 Diabetes Detection Program from JDRF

This content originally appeared on Beyond Type 1. Republished with permission.

By Stacey Simms

Stacey: Tell me more about T1detect.

Frank: T1Detect is an education and awareness program about type 1 diabetes(T1D) and its risks, and a very important component of that is making the [autoantibodies] test available to people. Because right now, they’re not really available to people except in the context of research settings, or as people like you might know, in the context of an actual T1D diagnosis, when someone has super high blood sugar, they’re in the hospital. Then the doctors will do a confirmation test to see if it’s type 1, we want to make it available to people who don’t yet have symptoms. So hence, T1Detect.

You can go and find the test in a couple of different places. First and foremost is the JDRF website, we have access to information and the test kit button on our website through T1Detect. You click the button, it gives you some information about what it is to have T1D, what the risk factors are, what are autoantibodies.

You click the button you go to the Enable portal, fill in some information, we’re asking for your name, mailing address, things like that. We’re also asking for some demographic information, we want to learn who’s getting to the end, who’s at risk, and that’ll help us improve the program going forward. Then you come to a choice where you can pay for the test, the test is not terribly expensive, it’s $55. To run the test, plus or minus a couple of taxes, you also have the option if you cannot afford the test to have JDRF [help] pay for the test and you will pay for the bulk of the cost.

Right now, it’s not a feature to ask your insurance company to pay for this, but in the future, it will be. All that being done, the test will get sent to you, you’ll get a little box in the mail. It was pretty simple, I did it. You have a Lancet, you poke your finger. Then you fill in two out of four of these circles on a piece of cardboard, let that dry, and send it back. A couple of weeks later, the company will tell you, you have one, two, or three of the type 1 diabetes-specific autoantibodies.

Stacey: What are you testing for?

Frank: Let’s take a little step back to the biology of type 1 diabetes, the biology of autoimmune diseases. Type 1 is an autoimmune disease, and one of the ways we can tell a person who has an autoimmune disease is we can look in their blood for signs and symptoms of that their immune system is doing something that it is not supposed to be doing. In type 1 diabetes, we look for something called autoantibodies.

Now autoantibodies are something that that’s sort of a general term to all different autoimmune diseases. People with multiple sclerosis have autoantibodies, people with lupus have autoantibodies. What we’re looking for in type 1 diabetes are autoantibodies that are specific to type 1 diabetes. What makes them specific to type 1 diabetes is they are specific to things that are in your pancreas. We actually are looking for three of the four primary autoantibodies that have been determined through many many years of research to be very good diagnostics for type 1 diabetes, they’re IAA [Anti-Insulin], IA2 and GAD65. Some people may remember those names from TrialNet or other organizations, but there are three of the four that help us diagnose to end and predict your risk…. Based on those three, if you have two or more of those, we know pretty well that your risk of developing insulin dependence is very, very high. In fact, if you have two or more of those in your blood, you already have type 1 diabetes… you may not be symptomatic, but you already have it.

Watch the full interview below:



Source: diabetesdaily.com

From Coping to Healing (and Everything in Between): An Interview With Michelle Bauer

This content originally appeared on Beyond Type 1. Republished with permission.

By Makaila Heifner

If you ask us, Michelle Bauer is about as badass as you can get. An Iron Man competitor, a newly published author, and one of the biggest hearts in the diabetes community, she’s the definition of a game-changer. Michelle recently sat down with Beyond Type 1 to talk more about her journey through grief after losing her son, Jesse, her work thereafter to create the support hub for T1D loss, Jesse Was Here, and what’s on the horizon now that she’s published her book.

Beyond Type 1: What were you doing before you got into diabetes professionally + how did you come to get so involved in the community?

Michelle Bauer: I started my own at-home business, doing medical billing for mental health clinics. I had no interest in diabetes, even though I grew up with five aunts and uncles that grew up with type 1 diabetes. It didn’t really resonate with me until Jesse, my son, was diagnosed when he was three years old on March 3rd, 2000.

I pretty much dropped everything to volunteer for JDRF. Doing the JDRF Ride to Cure became something I was really interested in, and I became an Executive Director for them. From there, I did Ironman Wisconsin and got interested in trying to find people with type 1 diabetes who wanted to do Ironman. I filmed and produced a documentary in 2008 about 12 people with diabetes doing Ironman, called “Triabetes.” Back then, nobody was doing that.

From there, I was doing the Riding On Insulin snowboard camp for kids with type 1 diabetes. And once Jesse passed away, I dropped everything even more, and then became a director for Riding On Insulin and helped develop camps all over the world for kids to snowboard and mountain bike.

Today, I work full-time at Diabetes Daily, as their Sales Director.

BT1: What was it like when Jesse was diagnosed? Did you have any prior knowledge about type 1?

MB: I had a knowledge of it, but my knowledge was basically based in the 1970s and ’80s. I’m kind of wowed by it and I look back at my grandmother, who had multiple kids with diabetes so long ago when there wasn’t even blood glucose testing. They were peeing in vials that would change color and they had one kind of insulin.

I was very familiar with it, but they were all so independent. Everybody ran high because you didn’t know what your blood sugar was at any given point in the day, so there weren’t a lot of low blood sugars. It was a lot of high blood sugar and complications. When Jesse was diagnosed, I didn’t know as much as I should have, but it was different. The insulin pump was a new thing, and it was hard to get him on it when he was five. I had to fight to get him on a Medtronic pump. Continuous Glucose Monitors (CGM) just weren’t a thing yet; it was just a lot of finger pokes, and regular and NPH insulin back then.

Can you talk about what losing Jesse was like?

Take it back to 2010: I was very active in the diabetes community, and back then, nobody talked about people passing away from type 1 diabetes. Our diabetes educators never really talked about it being a possibility. All I ever heard was, “Oh, they’re fine. They’re going to live a healthy life. Don’t even worry about it.”

When he passed away, it was very sudden and unexpected. I was known enough in the diabetes community, from the documentary, that people knew who I was, so it put everyone in kind of a panic. That if this could happen to my family, it could happen to theirs. In the early days, the panic went the wrong way. People didn’t want me talking about it, they thought I was scaring the newly diagnosed families, and it wasn’t a very well-received conversation.

When I lost him, there was this feeling of dread – I thought I was going to lose my community. I’d spent so much time working in diabetes and all my friends either had type 1 diabetes or their kids had type 1 diabetes. I was thinking, “Well, who’s going to want to hang out with a mom who lost their kid to a disease their kids have?”

What happened was actually the exact opposite. My friends really rallied around me. They wanted me at events. They wanted me to talk about Jesse. I felt that the piece that was missing for me was wanting to know other people who were going through what I was going through. I started reaching out to other people and talked more and more about my loss, and slowly but surely, started the Jesse Was Here network. I just found it was really cathartic to talk to these other people who understood, who’d been in my shoes, and could relate to my pain.

Is it hard to be constantly reminded of Jesse through the work you do + how you cope when those feelings come up?

What I’ve learned over the ten years is that everybody grieves differently. My way of coping was to talk about him constantly. I found the more I talked about him and being involved with other people, I felt like he was living on in my life. People just want to feel like their loved one is still part of their lives and people don’t forget them.

It was very cathartic. When I look back, I went from coping to healing without even realizing it. Because I was coping every time a new mom called me that had lost their child and I would sob. I would stand in their shoes, I would feel the pain all over again. Now, it’s more of helping and healing. I don’t have to go back to that day every time I talk to somebody who’s lost, because now part of my healing is helping other people. But there are always days where I see a little boy who looks like Jesse or the smell of insulin sometimes gets me.

What are other ways you’ve commemorated Jesse’s memory?

Just weeks after he passed, I got an essay by him in the mail from a teacher. I was feeling really distraught, feeling sorry for myself, and trying to figure out what my path was going to be outside of diabetes because diabetes was no longer in my life. The essay could have been about anything he wanted, and it was just called, “My Mom is Courageous.” He had detailed everything that I had ever done for him in diabetes. He had detailed all of these things that he was proud of, like Ride to Cure Diabetes and Ironman. I knew, right then and there, I would continue on the Ironman route. I created the Riding On Insulin Endurance Team, where there were 63 of us who did Ironman Wisconsin. 36 of our teammates had type 1, which was probably one of my coolest moments.

Every year since he’s been gone, we have a rock concert called Jessepalooza, where we get local bands together and do auctions. It’s really an excuse to get together, to celebrate him. He played guitar and he played drums. We do that every summer, and we’ve had ten of those.

I was very involved in the JDRF Ride to Cure Diabetes when Jesse was alive. The year he passed away, I decided to go back to Death Valley, California and ride in his memory. The JDRF Ride Director, Allie, and the coaches at the time knew me very well, and they advised me that mile 23 was going to be a mile of silence from then on, in memory of Jesse; they came up with 23 because he died on February 3rd. And so Mile 23 has morphed into this amazing thing, where at the beginning of the weekend they talk about how there are 99 miles, to celebrate all that we’ve done towards a cure for type 1 diabetes, but there’s one mile to remember those we’ve lost. It’s meaningful to way more people than just my family; it’s in memory of everyone.

Talk to me about the book…

I have to pinch myself that it’s a real, tangible thing. About a month after Jesse passed away, I started writing. I felt like, “Well, maybe I’ll write down how I feel, for the first six months and maybe my writing will help somebody else not feel alone.” The book was supposed to just chronicle the first six months, but I kept writing. At the five year mark, it was ironic, because I was looking back, saying, “Wow. How I feel changed. I need to write about that.” At the ten-year mark, I thought, “Even more so.” I started to find joy in my life.

There’s a lot of satisfaction knowing that people have gotten their hands on my book and it’s helped them. There was a point where I was wondering if it would ever get published. But I was giving this draft copy to people as they were losing children and I knew it was helping them.

Then, a friend of mine who I kind of lost contact with saw me post on Facebook, and, when he realized who I was, told me he’d started a publishing company and that we should talk. That was in February, and by April 23rd, he had launched it. Since then, it’s been number one on Amazon in a couple of categories. We’ve sold a lot of copies, and what I love most about it is not only are people who have type 1 reading it, but a lot of first responders in the country are reading it. In Wisconsin, it kind of went out to all of the Wisconsin police as a resource for them. That’s one of the most rewarding parts, that it’s helping those beyond the diabetes community.

What are you hoping that people get out of your book + what have you learned about yourself through the grieving process?

I hope that it helps people who are grieving a recent loss to have hope that they can find joy again; that they’ll be allowed to push a little bit of the guilt aside, and that they feel their loss, but allow themselves to find happiness again, because that is what the people who are gone would want.

I’ve learned you’re not the only person going through something. You can’t just walk through Target and think that the grandma ahead of you is just living life with a grandchild on her hip. A lot of people have lost something big in their life. I’ve become a little bit more compassionate with other people, their losses, and their grief.

What’s next for you + Jesse was here?

We’re really hoping, through the Jesse Was Here program, to reach more siblings, and get them talking to one another. We do a really good job with parents, but we haven’t really done a great job with siblings. I’m also hopeful to re-engage public speaking in the T1D community and beyond.  I’ve been a keynote speaker on many occasions and hope to inspire others with a “Don’t Waste Your Pain” message of why it’s important to get involved.

Source: diabetesdaily.com

Mark Andrews: A Tight End with Type 1 Diabetes

This content originally appeared on Beyond Type 1. Republished with permission.

By Katie Doyle

The Baltimore Ravens didn’t choose just any offensive lineup during the 2018 NFL draft – a key part of their strategy is Mark Andrews, a tight end from the University of Oklahoma who has been managing his type 1 diabetes since before he started playing football and into his rookie season.

Beyond Type 1 spoke with Mark about his pre-game rituals, how technology like the Dexcom G6 helps him stay on top of type 1 on long Sunday afternoons, and why it’s important to use his high-profile career to educate and advocate with National Diabetes Awareness month coming up.

How have you managed your diabetes through major life changes, like going away to college, playing a division 1 sport, or going through the NFL draft?

I was diagnosed at 9 years old, and it was the first time I ever saw my dad cry. At that moment, I knew it was serious because it wasn’t something my dad did very often. And since then, my family has been my rock. I was lucky enough to have a dad who was also a doctor and had an understanding of diabetes when I first was diagnosed.

Personally, I wasn’t very nervous. I knew that one day I wanted to move out, play football at a Division 1 level and ultimately play in the NFL. It’s something I was always very diligent about. I wasn’t going to let my nerves or anything else get in the way of that. My mom probably worried most, but my dad was instrumental in instructing my whole family in what to expect and what to know. I rely on them a ton. Using a CGM allows them to be a part of it and know my numbers at all times. It gives them peace of mind to be able to check in on me.

Mark

Image source: Beyond Type 1

How does your family support you from across the country?

My mom will always be my mom, so she still checks on me regularly. Last week, she texted me and said, ‘Hey, I don’t think you have enough complex carbs on board, you’ve been going low and trending low a lot. Just want you to eat something that gives you more complex carbs. I love you, hope you’re having a good week; I’ll talk to you soon!”

It’s awesome to get a text message like that and know my family has my back. After that, I ate a peanut butter and jelly sandwich just to have that background complex carb and went about my day. It’s always good having people look out for you — the more eyes you have on someone with diabetes, the better.

I’ve got a teammate right now named Orlando Brown whose dad had diabetes so he’s incredibly well-informed. He was my college teammate and now he’s my NFL teammate with the Ravens. He’s always wondering what my numbers are, and I actually share my numbers with him from my Dexcom.

When did you feel comfortable enough to talk to your friends and teammates about diabetes?

At first, I remember feeling a little bit reserved and not being totally open about it. I’d go hide in a corner to test. I also remember the first time my friends saw me testing my blood sugar. I was 10 or 11 years old, and they saw blood and thought it was cool. I was kind of in the spotlight because they were so interested in what I was doing.

That opened me up to be more vocal and to share what I’m doing and how I deal with things. After that, I became really comfortable sharing what I deal with having T1D and how I deal with it and sharing with others. I was very open talking to my coaches, and I had my parents to help me out with that, and they still do that to this day. Ever since then, I’ve always wanted to talk about it and shed light on what people with diabetes have to do.

Tell us about your pre-game ritual.

I do something a little bit different: I wear a pump, so I use that for basal (25%) and I use Lantus for my other type of basal (75%) on a normal day. But on a game day, I’ll go 100% Lantus — that allows me to be off the pump for long periods of time but not have to worry.

Knowing your body is key. Knowing what I put in my body and how it will affect me is something that I feel has been instrumental for my health. I’m a big fan of complex carbs; I eat peanut butter and jellies, especially on game days or the day before a game, just allowing myself to have that complex carb to hold me over while I’m exerting a lot of energy.

Having my Dexcom, and the way it allows me to see my blood glucose trends and see what foods react a certain way has been huge for me. There’s a lot that goes into diabetes management, and I think it’s incredible that I can rely on Dexcom and not have to prick my fingers all the time. It really sets me up for success on the field.

Who are your role models?

I didn’t know anyone else with diabetes growing up, but I have my dad, who is extremely knowledgeable and always researching different things. He’s the reason I went to 100% Lantus for game days.

I can remember, at a young age, having diabetes and seeing Jay Cutler in the League, and being able to tell myself that it’s possible. I adopted a mindset that this disease is a part of who I am, but it’s not going to define me and it’s never going to stop me in achieving my dreams. Football is my passion, it’s what I love, but now it’s my job, and diabetes is something I refuse to let affect my job.

You seem like you have a ritual down for games, but how about during the NFL draft? How were you feeling then?

There’s so much work that had been put into that moment, from my mom driving me to soccer practice, to all those hard hours put in on the field, it all lead to that moment of actually playing in the NFL. It was kind of scary to know that that you’re putting your future into someone else’s hands — into 32 organizations’ hands — but this has been my dream for a very, very long time.

Why is it important for young athletes with type 1 to have role models?

To be put on this stage, I’ve always wanted to give back and for me, that’s with diabetes — that hits home for me. Helping kids with diabetes is something that I’ve found has given me the most reward: raising awareness and talking to people about how I use technology and what I do with it, it’s to help people with everyday life and share some of that.

I’m going to work as hard as I can to be the best tight end that I can be, and hopefully one of the premiers tight ends in the League. I want kids to see where I’m at today, like I saw Jay Cutler, and I hope it inspires them to go out there and play sports and be active — to follow their dreams, no matter what they may be. A professional football player? Great! Go out and achieve it. Or if anything else, you know, This guy’s playing football at the highest level, then I can do anything else!

Source: diabetesdaily.com

Going Virtual: The Future of Diabetes Care

This content originally appeared on Beyond Type 1. Republished with permission.

By Todd Boudreaux

Ashlyn Mills is a physical therapy assistant in an outpatient setting in Florida, working with people with orthopedic and neurological disabilities. She was diagnosed with type 1 diabetes when she was 19 years old. Ashlyn recently started using DreaMed’s telehealth platform to see an endocrinologist, and spoke with Beyond Type 1 about the shift to virtual care.

Beyond Type 1: To start, can you tell me about your diagnosis, and how you originally managed your diabetes?

Ashlyn Mills: I had a strange diagnosis, it was caught a little bit early. I was already being followed by an endocrinologist for some other issues and we started noticing some higher blood sugars on labs. My A1c wasn’t incredibly high so they put me on a Dexcom and started monitoring my blood sugar so they could see what kind of patterns I was experiencing. My fasting blood sugars crept up higher and higher and they went ahead and added basal insulin at that point. I was insulin dependent about three months after my diagnosis.

They diagnosed me with type 1 from the start. They did say that it looked like a latent onset (LADA), but it was pretty clear that it was type 1 from the get go. I was using insulin pens at that time.

Tell me about your treatment since diagnosis.

I live in a rural area in Florida. There’s not an endocrinologist around here. I had been seeing an endocrinologist at the Mayo Clinic in Jacksonville, which is about a two and a half hour drive for me, and that was just because that’s who came recommended by my primary care physician. I was diagnosed at the Mayo Clinic and followed up with endocrinology there for the first two years after my diagnosis. The nurse practitioner that I was seeing there actually left and came to a clinic that was about an hour and a half from my home, and I had a good rapport with her. I went ahead and followed her.

Her and I had come to the understanding that it was difficult for me to see her every three months, so instead I saw her every six months. It became a little bit of an issue for me being able to talk with someone in between if I had issues, which is how I found DreaMed. I could find somebody to bridge the gap between those six months that I’m going without seeing a doctor in person. Now, I’m able to communicate with someone whenever I want to.

How have you been keeping up with your job as a healthcare worker living with T1D during the pandemic?

Florida did a stay at home order back in March. About mid April my employer decided, “We’re going to send everybody who is high-risk home.” I worked from home for about two months and then the numbers started looking better and they sent me back to work. Now, I’m working in the clinic every day and it is nerve wracking. I’m still working but I’m quarantining from my family right now because I was exposed at work.

I go through phases where I feel like I would be fine if I got it but then I have bad blood sugar days and I’m like, “This is it. If I get COVID I’m doomed because my blood sugar was over 200 mg/dL all day today.” Overall, I think I would be okay but I do worry about being hospitalized. I think that’s my biggest fear with the whole entire thing is ending up in the hospital with no family there to be with me. I pray every day that I stay well but I am working and the numbers in our county are rising quickly

How did you find out about DreaMed and what was that process like getting started?

When I was sent home and started doing telehealth with my patients I realized this is easy, there shouldn’t be any reason why I can’t do this.

At the time my endocrinologist’s office was not offering telehealth appointments, even in the midst of COVID-19. I started doing a little bit of research and found DreaMed. I went on the website and signed up for more information. My experience as a provider doing telemedicine is what led me to push to try to find someone that could do the same with me as a patient.

How does DreaMed work?

They asked me what state I lived in and they connected me with an endocrinologist here in Florida, Dr. Kava. I set a telemedicine appointment with her and she spent about an hour with me on that first call. I think you can view it as a replacement service for your current endocrinologist or just an add-on to your current care.

Was it surprising your appointment lasted for an hour?

Dr. Kava would have spent as long as I wanted her to with me. My normal appointments in the clinic, I drive about two hours to be seen for maybe 10 minutes. Most of the time there’s not too much to discuss at those appointments you just make a few changes, but she asked all about my personal life, including my mental health during the pandemic. She really seemed invested in me as a person, too, not just diabetes.

She nitpicked my data because I told her I’m a little bit of a control freak. She said, “If you want tight control I’ll help you.” She spent a long time combing through all of my graphs and figuring out what we could do to get things even tighter than they already were.

Has any diabetes provider before Dr. Kava asked about your mental health?

That’s the first time I recall that happening. When I was first diagnosed I had a diabetes educator talk with me about mental health and diabetes to prepare me for what may be to come with my mental health. They assume if your control is good you’re doing okay with your mental health, but that’s not always the case. I don’t necessarily quit caring for myself when I feel burned out but that doesn’t mean I’m not struggling mentally with it.

It was Dr. Kava spent a good bit of time talking with me about mental health and diabetes and how my mental health was doing with COVID-19 and all of that so I was very impressed with that.

Were there any other specific suggestions that stuck out to you?

Most adult endocrinologists seem stuck in the stone ages a little bit. Dr. Kava looked at my data and she said, “You’re on a closed loop system. The system is going to suspend you if you’re going to go low. If you want to stay below 140 or if you want to stay below 120 I can help you get your settings there.” That was the first time that I had ever had someone be willing to be that aggressive with my care, but I felt like she was totally game for whatever I wanted her to help me do.

Do you think that you’ll continue using DreaMed?

Yeah, ideally I would like something to bridge the gap right now. Although my endocrinologist has started offering telemedicine I’d like somebody that I can talk with through DreaMed and not feel like I’m bothering. When you’re bothering your endocrinologist a lot of times you’ll get an unexpected bill; it would be nice to pay the monthly fee and have somebody at my fingertips whenever I need them. If my endocrinologist quit offering telemedicine I would love for DreaMed to replace my current endocrinologist. As much as I love her it’d be nice to do telemedicine and not have to drive two hours to be seen by someone.

Do you have any advice for someone living with type 1 who doesn’t currently have access to a local endocrinologist?

I just think if anyone’s trying to figure out what to do in the time of pandemic or just tired of driving to see an endocrinologist as frequently as they do, I would suggest looking into DreaMed. They’re currently offering a three-month trial. I have no dog in the fight, I’m not being compensated to say anything about them. You have nothing to lose. They are very honest and I think it’s worth giving a try.

Source: diabetesdaily.com

Diabetes and Reality TV, with Marcus Lacour from Say I Do

By Alexi Melvin

Netflix’s “Say I Do” is a reality show about surprise dream weddings, but its first episode showcased something we don’t often see in reality TV – type 1 diabetes (T1D). In the episode, Marcus LaCour was given the chance to surprise his wife Tiffany with a magnificent wedding do-over.

Alongside planning and logistics, Marcus also spoke candidly about his life with type 1 diabetes, spurred by a conversation around how wedding catering decisions needed to take into account the food choices he makes to help manage his blood sugar levels. We caught up with Marcus to chat about his experience on the show, how he handled presenting his type 1 diabetes to the world, and where he and his family are now.

Did you ever imagine that you’d be on a TV show on Netflix?

I definitely didn’t expect it. It’s one of those things where you’re like, you know what? If it happens great, if it doesn’t, it’s great too. I don’t think it dawned on me really until we started shooting. Once we started filming, I was like, “Oh, this is it. This is legit.”

When you were talking about your T1D on the show, it came across so well. Is that something you discussed beforehand with the producers? Did you preface anything or was it organic?

It was organic. We literally were just sitting and talking about it. The subject of food came up and early on I told them, “Hey, I’m a type 1 diabetic.” We were just having a conversation of, “Hey, how’s this, how’s that? How did that happen? How were you diagnosed?” Literally, just conversation flowed from there. In my honest opinion, it was one of the most genuine conversations I’ve had with anyone about my condition, just because it was in a room and in the area where there was an open space where I could tell them everything I needed to tell them about the condition.

You touched on how much your wife did for you when you had a situation where you lost your healthcare – the rationing of food and things like that. Did that also include rationing of insulin? Were you having issues with getting supplies?

I was. I was getting samples from my doctor’s office at one point. You know when you’re trying to ration insulin or trying to pick the insulin you can afford, it’s not as effective as what you’re used to. I was getting the regular 70/30 mix insulin pens. I kept bottoming out throughout random times of the day. I was used to taking NovoLog but [at one point, my doctor] didn’t have any NovoLog samples. So I was literally just getting whatever he had.

When [my doctor] did get the NovoLog pens, I was using those thinking, okay, he should have some more samples. Well, there was a time where he didn’t, and that time for about a month maybe, we’ll say three weeks, I was rationing my insulin, because I’m trying to make sure that if I do go high, I have enough to cover the high. If I go low, just [having food] to eat, but more importantly, what you need on a daily basis [to keep your levels stable].

One day, the doc called and said they didn’t have any samples. I was down in my last 10 units. So for about an extra two and a half, almost three weeks, I was rationing 10 units of insulin.

When did that situation start getting better for you?

I ended up getting a loan from my boss because at the time I started a new position and he was like, “I don’t want to see you suffer.” At the time, NovoLog Flex Pens were $250 for the pack. So he gave me a check for $250 and said, “Hey, go get your meds.” So that was how I got through that. Then somehow, by some sort of miracle, after that pack ended, my doctor, all of a sudden, got samples again.

What is your management routine like now?

It’s the Omnipod right now. I’ve got better insurance that covers the pods altogether. It’s still an adjustment for me though, because I’m used to not having a PDM. Before, [when] I was on the injections, it was, wake up, take your long term, and then just carry the Humalog pen on me at all times. Then with the pump, [if] we’re going to work out, I forget to suspend my insulin flow. Or if the site doesn’t take, having to double check and make sure blood sugars aren’t really high. So it’s a couple of different things, but it’s not bad. It’s still an adjustment though.

Do you feel you prefer the MDI or do you feel the pump ultimately is going to be better?

I’m already seeing changes in my numbers, just from average standpoint. On the shots, the lowest my A1C was, or I could get it, with 6.9, 6.8, but now I’m seeing, that even though there are days where I may be high because the pod didn’t take, or I may run low, those days are few and far between, so I’m running normal on a lot more of a regular basis.

Do you use a Continuous Glucose Monitor (CGM)?

I don’t. It looks we have to go four months without a CGM and track those numbers before insurance will approve it.

In terms of your diet, on the show, you talked about how you’re conscious of what foods are going to spike your blood sugar. Is there a specific diet you to stick to? Are there certain foods you prefer or are you getting more flexible with it because of the pump?

I am still a very conscious eater. I prefer to eat clean. Everything has to have a balance. Now I know with the pump, you have that freedom to literally eat whatever you want. But for me, when I was diagnosed, I didn’t have that option. So, it was literally sticking to that diet, sticking to that regimen. Everything has to have a fresh fruit or fresh vegetable, [there] has to be a starch. There has to be a grain and there has to be a protein. That’s the only way that I know.

I came across a comment online that said, “Well, diabetics can eat whatever they want.” It’s very true. But for me, I don’t want to run that risk. I think I’ve always done something whenever I got a new insulin, when I got my Humalog, I wanted to make sure it worked. So I got a peanut butter Twix, took it to cover it, just to see what it would do. When I got my pump, I had a chocolate chip cookie just to make sure it was working. It would work, but overall, my diet is consistent. I prefer to eat clean. It’s just because I know these things aren’t going to have a whole lot of impact on my blood sugar.

I saw on Instagram that your daughter’s been learning more about your T1D management. How’s that going?

It’s going well honestly. Before, when I was taking my shot, it was just, “Hey, Daddy’s got to take his insulin,” or, “Daddy’s got to check his blood sugar.” So she’d always been curious about it. Then one day I had to change my pod. “Are you changing your pod, Daddy?” “Yeah, Daddy’s changing his pod. you want to watch?” “Yeah, I want to watch.” So she came in and got hands on. I always want to make her aware just in case something happens. If my blood sugar goes low and I’m unresponsive, or if I’m too low and I can’t get up to get anything, I want to make sure she’s aware to say, “Oh, Daddy’s not feeling well. Daddy he needs something to eat.” Or, “Something’s going on. Let me tell Mommy.” I always want to make sure she’s aware of what my condition is, not to scare her, but to the point where she can be reactive.

Who did you have as a support system when you were first diagnosed?

My mom was my biggest supporter. I didn’t keep it from my friends, but I felt they wouldn’t be able to understand. They were used to me just being able to get up and do whatever. If we wanted to play football, it was get up and do it without having to worry about anything. They knew I had type 1 diabetes, but they didn’t know the entire scope of what it meant to take care of that condition. So it was my mom. Then over time, my friends started to get a little bit more of an understanding of it. So my friends would ask, “Hey, what’s your blood sugar like? Are you OK?” Or if I was going to the gym to work out with some of my buddies, “Hey, don’t forget your meter.” Or I’d always bring my meter with me and I’d have to check in the middle of work out, see either I’m high or low, or just to figure out where I was at. They would always ask, so they held me accountable in that regard.

Have you been getting a lot of people in the type 1 community reaching out on Instagram or social media?

I’ve gotten that. It’s always refreshing because [they’re] like, “Thank you for representing and letting the world know about your condition.” Well, it’s a part of me. I’d be foolish to hide it, like, “I don’t have a condition.”

Had you been involved in the type 1 community at all before appearing on Say I Do?

Not necessarily. I’ve always wanted to though. I’ve been at this for almost 20 years, it’ll be 20 years in November. When I first got diagnosed, there weren’t a lot of support groups. There weren’t very many places for me to go where I could vent or even if I had high blood sugars or even lows, how to combat that and deal with those. But now times have changed. I would love to be able to get out and talk to people about what our condition is and how to manage it effectively.

What’s next for you and your family?

Honestly, I am not sure. I work for a Children’s Hospital down here, so I recruit for them and it’s just more or less just going with everything at this point, just laying back and enjoying the ride while we have it.

Do you think you’re going to seek out more TV opportunities?

To be honest, I don’t know. This is all new. It’s all new to both of us. If more opportunities come, then yeah. Absolutely. But it really just depends on what comes down the pipes. I think the ultimate goal would be just for us to just enjoy this and see where it takes us.

Source: diabetesdaily.com

Interview with Type 1 Musician Austin James

This content originally appeared on Beyond Type 1. Republished with permission.

By Makaila Heifner

Austin James is a FreeStyle Libre Ambassador and this content was made possible with support from Abbott Diabetes Care.

Austin James is a multi-instrumentalist from Hartford, Connecticut whose music blends folk, rock, and soul to create a new genre-bending sound. He recently sat down with Beyond Type 1 to answer some rapid-fire questions about his life with diabetes and musical journey.

Tell us about your diagnosis.

AJ: I was 17, a senior in high school, getting ready to start my second semester of my senior year. And I got really sick, lost a lot of weight, all the signs for diabetes. A buddy of mine in my class had diabetes, so I ended up checking my blood sugar and it was well over 600 (mg/dL) so they rushed me to the hospital and it was an overnight change.

How did you know it was diabetes? Did someone suggest that it was diabetes?

I actually had looked up the symptoms. I had known about diabetes because I was close with my friend, so I was his accountability partner which is pretty funny, because I didn’t have diabetes at the time, so I was responsible for that. I knew something wasn’t right, I told my mom, “I think I’ve got diabetes.” She was like, “No, you’re fine. You’re fine.” She just kind of saw me withering away, slowly lost about 30 pounds. I was so sick, so thirsty. And I was preparing to go into the military and everything just changed. It was pretty wild.

What would you say was the hardest part about the diagnosis?

Just the change in the trajectory of my life. I came from a military family and not be able to do that was really hard for me at the time, ended up being a blessing in disguise that I got to chart my own path and become a musician. But yeah, that was probably the toughest part.

How has diabetes impacted your music?

Well, I mean, before I was on the FreeStyle Libre system, I was doing all finger pricks and it was just really painful. I’m a multi-instrumentalist so I’ve been playing violin for 20 plus years and I play guitar and your fingers are already pretty beat up from playing the instruments and then you have finger pricks on top of that and it can get pretty painful. So that’s been the biggest challenge. And then just peace of mind when you’re going on tour and making sure you have all these supplies and making sure you’re not running short on anything. And technology now helps so much, having the pump and continuous glucose monitor (CGM) are an added layer of security there.

When you’re preparing for a tour, how do you make sure you have everything and that you’re ready to go?

I have a checklist. I’m a pretty organized person so I have my checklist ready and everything good to go. And my mom, because my mom always checks in on me. She lives in Florida, and she’s still a mom even though I’m 31, she still checks in on me. So she makes sure I have everything and she goes through the checklist with me.

What’s your favorite and least favorite part about touring?

My least favorite part of a tour is the hotel, I can never sleep in them. I like my own bed, so that can be pretty tough, but my favorite part is the traveling. I like being in new spots. I like various things, different cities, different cultures.

Who is your biggest influence for your diabetes journey?

Funny enough, obviously with the music is watching Nick Jonas. I mean, how appropriate? But watching him live a very fulfilled life, it’s pretty cool. I mean, obviously he’s a musician as well, but it makes it that much more relatable. And I think Jay Cutler, the former quarterback in the NFL, definitely those two guys for sure.

Biggest influence on your music?

I’m a big Aerosmith fan. Steven Tyler, he’s my guy.

What advice would you give to someone recently diagnosed with diabetes?

That it is tough, it’s going to be a hard road. You’ve got to be honest with them, but at the end of the day, you can really live a fulfilled life. And the technology we have now has come so far and not to get too down. You can really live a full life and it is possible. And if you really do take care of yourself, you can live a healthy life as well.

Watch Austin speak about his CGM below, and check out his music HERE

Source: diabetesdaily.com

Cracking the Code: CEO Eran Atlas Talks Dreamed’s Revolutionary Tech

This content originally appeared on Beyond Type 1. Republished with permission.

By Jordan Dakin

Beyond Type 1: Can you talk about the founding of DreaMed?

Eran: DreaMed started as part of one of the biggest institutes for people with type 1 diabetes in Israel. The director of this institute is Professor Moshe Philip (co-chairman of ATTD). His vision was to bring in technological people to try to develop solutions to help the needs of people with diabetes. One of our first projects was to create an algorithm for automated insulin delive­ry… We were the first in the world to do automated insulin delivery clinical trials outside of a hospital and we published these results in the New England Journal of Medicine. This was the first manuscript about people looping and then we were the first to send people home with automated insulin delivery in 2012.

We created a relationship with Medtronic Diabetes, which allowed us to communicate with their insulin pump and a continuous glucose monitor. After we finished a lot of sessions of clinical trials, we decided we wanted to regulate our technology software as a standalone medical device. That’s why we established DreaMed in 2014. Since then, we’ve made a licensing deal with Medtronic. They were the first investor in the company and our technology will be part of their next-generation advanced hybrid closed loop system: the 780G. But working on the closed loop project, we always knew that not all the people with diabetes would have access to closed loop, but we very much believe that the majority will have access to continuous glucose monitoring (CGM) technology.

The thing that we were focused on is how we can use our expertise to create something that will be able to help the providers and the patient better dose insulin based on data that comes from CGM and from insulin delivery devices. For that purpose, we started to develop a technology that we call today the DreaMed Advisor. DreaMed Advisor is a decision support system that captures all data and recommends very precise, personalized insulin delivery for that specific patient. Not in a real-time manner, but in the manner of a treatment plan.

BT1: Can people on MDI utilize DreaMed advisor?

E: It’s not regulated for MDI patients at the moment. Our MDI version is on clinical trials, and I really hope that during this calendar year, we’ll be able to share the status of these programs and how fast we think it will be available on the market.

Do you think part of the reason people are sometimes slow to adopt technology is because there are some who question using it for matters like medical decisions?

I think what we’re experiencing right now are more logistical issues – how the data flows from the devices to the platform, the fact that clinics are using multiple platforms to download the data from the patient devices, and the fact that most of what we see today is not digitalized. Clinics are still printing reports – about 20 to 30 pages every visit. They don’t have the manpower because they are so overloaded with work: all the documentation, mailing the claims, dealing with that download of the data when the patient arrives at the clinic, etc.

But what I see when I visit clinics and when I talk to people and I hear lectures is that 2020 might be a moment where some of the barriers can be solved. Not all of them, but some of them can be overcome to allow us to implement such a program.

One of the things that is very interesting to me is the role of the people with diabetes in this. Everybody knows that people with diabetes pay a lot of money for healthcare costs, right? The majority of that is from the insulin costs, but even to see a doctor, there is a certain co-pay and co-insurance that patients are paying each visit. The question is how much patients will be open to removing the barriers, and saying, “I prefer to pay out of pocket for a service that will allow me to get the titration of my data with technology, together with a healthcare provider that is considered a top doc because they have clinical studies behind them. For that, I’d be willing to pay out of pocket and eventually, I will save costs because I will pay less, and I will get better outcomes, and I will spare my other costs of going to the ER in hypoglycemia and DKA because of that.” I think that patients are playing an important role in this equation.

I’m sure a big goal for DreaMed is to lessen the burden on physicians in terms of needing to see patients so frequently.

In no way are we trying to make providers obsolete. We think that they are an essential part of patient care because at the end of the day, caring for a patient with type 1 diabetes or any type of diabetes is not just about numbers, it’s not just about the type of insulin. There are a lot of things behind it and we need our providers in the game.

Dr. Greg Forlenza from the Barbara Davis Center very nicely told me, “With your technology, I’ll finally be able to go back and practice the art of medicine and not be a technician.” I think that this is the service that we would like to bring to providers because if we’re able to let them go back to dealing and practicing the medicine, and we can take away some of the barriers, all the technicality and calculations, and we’re going to provide better, more frequent care for their patients. I think that everybody will be happy about that. One of the goals that we have for this year is to try to build the right model in order to make that happen.

We’ve heard that certain endos are starting to charge a co-pay for visits where they review CGM technology, which hasn’t previously been the case. So costs in terms of things like that seem to only be going up for these patients.

I understand what you’re saying, I think that we need to look at that. We have two sides to this. Number one: there’s the side of the provider that spends a lot of hours caring for their patients and the majority of these hours are non-billable time. In the end, we want to find a way for the providers to collect some of this money because we don’t want our doctors to lose money. We want them to sustain their business so they will be able to provide us better care.

But the magic here is creating that without significantly increasing the costs on the patient side. Because if it will increase the cost from the patient’s side, the patient will say, “I don’t want to download my data, don’t charge me for that” and that means we lose because then they’re not going to get that same tight control. These are some of the questions that we are trying to find answers to. How can we be innovative not just on the technology side but also on the commercial side to find a model that will be good for providers but also good for patients?

If someone is interested in utilizing DreaMed’s technology, where do they go from there? Do they just contact their physician and ask if they can use DreaMed?

Right now, that’s the right process. They need to go to the doctor and tell them, “I’ve heard about this cool technology, here’s the information,” and put some polite pressure on the doctor to explore the technology and see if they can implement it. If the clinic is using Glooko, we are integrated, so they can continue to use their Glooko account and we will be able to get into agreement with the clinic and open Advisor on top of Glooko.

If the clinic is using Tidepool, or if the patient has an account, we are also integrating data from Tidepool, so we will be able to just provide a clinic our standalone platform and then connect the clinic’s Tidepool account. From there, every time that a patient downloads his data through Tidepool, we would be able to pull that data and analyze it, then provide recommendations for the provider.

What do you envision as the next step? What’s ahead for DreaMed?

I think that next step from our end is to develop more technologies so we will be able to expand our intended users. We’re working to reach patients on multiple daily injections – that’s our first goal. Then we’ll go to those on insulin with Type 2, either multiple daily injections or basal only. That’s from the development side. For 2020, our main goal is to try to find the right commercial model and how we can have as many patients as possible enjoy this technology as fast as possible.

Can you talk a bit more about the importance of patients having access to any and all options?

I think that patients should have the right to get access to the top tier docs anywhere, anytime that they want to. But that doesn’t mean that they will be able to make all of their treatment decisions alone. I think that there is a great deal of importance in having healthcare providers as part of patient care. But I do think that it’s wrong for patients to have to wait for six months to see a doctor in order to change something in their treatment.

We need to find ways to make top tier treatment accessible to everyone… This is what we believe in. It’s in our mission to provide the best solutions for people with diabetes with our technology.

Do you have a personal connection to type 1 diabetes?

Nope. I don’t have a personal connection. I’ve been working in this business for 14 years. Seven years of my career was spent in the hospital. I was the technical guy in the clinic sitting in the corridors, talking to patients. We did closed loop studies and in those closed loop studies, we did 24-hour studies, stayed overnight, and took care of patients. So I have a very strong connection to people with diabetes.

The fact that we have the ability to provide something to improve their care is a privilege. It’s not something that everybody gets the chance to do in their lifetime. That’s why I’ve been a part of this for so long, this same type of work, because I don’t have a personal connection, but I have an emotional connection to people with diabetes.

Source: diabetesdaily.com

Onederland: Poems About a Childhood with Type 1 Diabetes

This content originally appeared on diaTribe. Republished with permission.

By Eliza Skoler and Kelly Close

Jamie Kurtzig, a high school student living with type 1 diabetes, just published a book of 100 poems that she has written over the last ten years

Onederland: My Childhood with Type 1 Diabetes is a book of 100 poems recently published by a 15-year-old diabetes advocate, Jamie Kurtzig. The book takes readers through Jamie’s childhood, touching on themes of growing up, navigating challenges, and finding hope. We attended the book launch yesterday and were so impressed by Jamie’s discussions about diabetes. We asked her if she could give one piece of advice to families that reflected the sentiments of her own family, and she answered eloquently with a single word “Hope.” She continued, “Never lose hope.”

Jamie was diagnosed with type 1 diabetes when she was one year old and has been writing poems since the age of five. Her book is now available from Book PassageBarnes & Noble, and Amazon. We sat down with Jamie to learn about her poems and her vision for this book.

Jamie: I’ve always liked writing poetry; I wrote my first poem when I was five, and it’s actually included in the book. Writing poetry helps me express myself and make sense of things and think about things, so it’s been a really fun process. I’m excited that Onederland is now published.

What did you learn about yourself during this process?

Jamie: Diabetes has really influenced who I am, and it has also given me a passion for finding a cure, something I want to do for the rest of my life. I realized this while writing my book.

What do you most want people to know about Onederland?

BookJamie: All of the proceeds are going to diabetes non-profits – including The diaTribe Foundation – to help find a cure, one of my main goals. I would love to experience just one day where I do not need to check my finger or bolus for a meal or have glucose tabs for low blood sugar. I’m so lucky to live in the Bay Area and have access to tools to help me manage diabetes; we need to find a cure not only for people like me, but for people everywhere.

How did you go from the poems you’ve written over the last ten years to this incredible, finished book?

Jamie: I had these poems but didn’t know what to do to get them on paper, so I talked with Book Passage, an awesome local bookstore. They introduced me to great mentors, who helped me create a story arc — my story — so that the book evolves along with my life. I start with an intro of me (“Where I’m From”), and then move into some of the challenges in my life and how I’m dealing with them and working with them, and then into more hope. I also wanted to include an index so people could see how old I was when I wrote each poem.

What was the hardest part of publishing a book?

Jamie: Getting all the details right! I had to order three proofs before I caught all the mistakes.

Who are your favorite poets?

Jamie: Mary Oliver – I have a giant quote of hers on my wall. And also Emily Dickinson.

How did your family respond to your choice to publish a book of poetry?

Jamie: My mom has been so supportive of me. In everything I do she always supports me and helps me get things done – which is awesome because sometimes it’s hard for me to get from ideas into… a book!

We asked Sara Kurtzig, Jamie’s mom, to tell us a bit more.

How do you feel about Jamie’s book of poems?

Sara: So, so proud. She’s so graceful to me, and I so appreciate her way and her spirit, and I think it comes through in her book. I had never read her book until she asked me to read her proof. I read the whole thing on the airplane and I was in tears. She had to do a lot of work to make this happen. She had to figure it out. She picked the paper, she picked the font, she picked the title. It’s a lot of thinking. I feel that she did not cut corners and took the time to do all of it. And I am so proud. She did this all in her own way. And she is donating every penny to various diabetes non-profits. We can get a lot of places with that power.

Find Onederland: My Childhood with Type 1 Diabetes at Book PassageBarnes & Noble, and Amazon.

Jamie was a Junior Summer Associate in 2019, working with college students and recent college grads at The diaTribe Foundation and Close Concerns. She is also now a writer for diaTribe – read about her experience with Loop and her advocacy work at the 2019 JDRF Children’s Congress.

Source: diabetesdaily.com

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