Shadow’s Edge: Video Game Designed to Help Kids Cope With Chronic Disease

Being a kid is hard enough as it is. Add in having a chronic disease and it can make those very special years potentially very isolating ones. Shadow’s Edge is a virtual reality game that allows children to process and express their feelings about their disease — or whatever else they may be going through. This mobile game can help change the experience of a serious diagnosis, or challenging times, by combining art therapy and cognitive behavior therapy and giving children a safe place to not feel so alone.

Action video games can help reduce depression in teens and Shadow’s Edge hopes to help bring positivity and community to those who need it most. Founder and philanthropist, Sherri Sabrato Brisson, is a brain cancer survivor who initially co-wrote a book, “Digging Deep: A Journal for Young People Facing Health Challenges ” with Rose Ofner, to help kids process their chronic disease or serious illness and it had great success. She then met Rosemary Lokhorst, who is now the game producer because of how much she loved the concept and that is how Shadow’s Edge was born.

Shadow’s Edge is a free and completely donation funded, virtual city that has just been overtaken by a storm, much like our lives after being hit with a diagnosis of some kind. The storm removes all the color from the city, much like our disease has the potential to take away some of our happiness…if we let it. The object of the game is to bring back the color to the city through writing and art, which helps empower the player to take on whatever it is they are going through.

Shadow's Edge

Photo credit: Shadow’s Edge

So far, Shadow’s Edge has worked with many organizations and university clinics in the US, Brazil and in Europe, focusing on kids and teens with cancer, and has received very good feedback, especially from doctors. Currently, they are running a complex research study nearby the Lurie Children’s Hospital in Chicago, with more than 100 kids testing Shadow’s Edge. So far, the results have been fantastic, and the game is helping these children build up the resilience to tackle the challenges they are facing.

I was able to chat with Sherri to find out more about Shadow’s Edge and their plans for the future.

Sheri, the journey you went through with brain cancer must have been so traumatic. Did writing your first book, Digging Deep: A Journal for Young People Facing Health Challenges, prove to be therapeutic? What about creating this game?

As a survivor, I can tell you, I know how difficult it was for me to even know how I was feeling at the time, let alone be able to express these feelings.

On my 25th anniversary of survivorship from brain cancer, I envisioned a world where every young patient has real-time access to the tools he or she needs to build emotional resilience through their experience.

I started by co-authoring Digging Deep: A Journal for Young People Facing Health Challenges, with Rose Offner, MA. I donated 35,000 journals to hospitals across the country, but it still wasn’t enough. So, we decided to meet young people right where they are—on their phones, playing games.

Seeing the success of your book shows that there is a need for resources and tools for people who have serious illnesses or a chronic condition. How do you think Shadow’s Edge can help fill that gap for our children?

Just like the physical journal, Shadow’s Edge helps teens build their emotional endurance to tackle the challenges they face through the power of their personal narrative. There are very few resources directed at teens today. Our aim is to meet them where they are – on their phones, playing games. So this time, teens are engaged through their medium—their phones or tablets—to express themselves through writing and now, covering a city in graffiti! Through gameplay, teen players realize they needn’t stay in their confined world—they have the power to reshape their world into whatever they choose. Through their expression, they can create beauty where there was once dilapidation: There can be light; There can be color; There can be hope. And, there can be a community.

“When starting to play Shadow’s Edge, a teen may not even know how they feel or what is troubling them. As they continue through their journey, they often discover they are at a different place emotionally in the end—there may be a sense of resolution, a greater understanding, a place of peace”.

I know for me personally, when I was diagnosed with type one diabetes, finding community changed everything for me. I was so much better off mentally and emotionally and had a much better outlook on my future. How does playing this video game help children connect with others? 

Yes – connection is key to build resilience and to feel better! Teens asked us for a space that is theirs only, where they can express things for themselves, as they are not always clear or ready to connect. Interestingly, this working with oneself helps to reach out. Additionally, the game has an in-game sharing space (once you reach the new level, Disillusionment). There you receive a means to see other players’ art and provide messages of support and where you can publish your graffitis. The community aspect is one that we are focusing on to expand – it is the key ask of players to build on.

I could see how the concept can be applicable to many different obstacles a child could be facing, what other areas are you focusing on and what do you hope to accomplish?

We are expanding the content so that teens facing a variety of difficult situations can benefit from it – these can be changes in the family like a divorce or death of a family member, bullying, anxiety, stress, depression, identity questions.

Shadow’s Edge has the potential to help so many children going through hardships. Where do you see Shadow’s Edge going from here?

We are working on expanding the community aspect of the game. We want to create a community around self-expression where teens facing all kinds of challenging situations can share, collaborate to create art, find psychoeducational content and just connect with each other.

As a brain cancer survivor, what message would you like to share with people facing a health battle of some kind? 

Your challenge does not define who you are, you define this. When you are ready, take an active role in opening up–every time you tell your story you tell it a little differently, this make you integrate it and see new perspectives. Practicing this also supports you to understand you are stronger than you think, getting comfortable with your story and owning it as a part of you, but not all of you.

Shadow’s Edge is available on both IOS and Android, and available in 6 languages.

They also have a special website dedicated to helping parents and healthcare professionals who are helping a young person with illnesses, see more information at www.diggingdeep.org.

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

Review: Genteel Lancing Device

Regularly checking blood glucose levels is an integral part of optimizing diabetes management, and in particular for patients who use insulin. However, frequent finger pricks can be uncomfortable and even painful for some, especially for children, which may be a deterrent to regular blood glucose testing. Genteel is the only currently-available lancing device on the market that is FDA-approved for both finger and alternative site testing and uses a unique technology to minimize the pain of finger pricks for blood sample collection.

Who They Are

Genteel was founded by Dr. Christoher Jacobs, a biomedical engineer. A friend of his was diagnosed with type 2 diabetes and expressed the challenges of the condition, including the pain he experienced from frequent testing. As a result, Dr. Jacobs set out to develop a device that would minimize the pain of obtaining a blood sample, and the Genteel device was born.

What It Is

The Genteel lancing products make use of several ways to minimize the pain of fingersticks. They allow users to select a variable “contact tip” size to minimize the penetration of the lancet under the skin. Also, the products make use of vacuum technology to help draw out a drop of blood for testing automatically, instead of having to squeeze the site.

Image by Genteel

There are two products available — the Genteel Lancing Device and the Genteel Plus Lancing Device. The basic lancing device is only compatible with the provided “butterfly touch” lancets, whereas the upgraded version is compatible with many other lancet types.

Check out the video below that explains exactly how the device works:

My Review

Personally, I found the device to be a bit elaborate and not very practical in terms of ease of use. When the product was first brought to the market, it was reviewed by Ginger Vieira, and I agree with much of her commentary regarding the product size, appearance, and lack of discreteness in use.

However, I can confirm that obtaining a blood sample was not painful for me, whether sampling from the fingertip or from the alternate site (my palm). While I still felt the contact of the lancet, it was definitely not painful and was certainly much more comfortable than many of the fingersticks I have experienced in almost 13 years of testing my blood sugar on a daily basis.

I can see that for some patients, for example, small children, this device may help to eliminate the fear and discomfort of checking blood sugar levels, and hopefully help the user achieve more frequent tests, and as a result, better glycemic control. The stickers included for decorating the lancing device are sure to be a hit with the kids, too.

The products aren’t cheap though! The base model costs $49.99 and the upgraded version $99.99.

Where to Buy

Both the basic and plus models can be purchased directly from the Genteel website. You can read more about each device before making the decision here:

Conclusions

While the Genteel lancing device may not be everyone’s favorite choice, it certainly helps with comfortably and painlessly obtaining a blood sample for testing, which might be a huge consideration for some patients, and in particular, for small children.

Have you tried Genteel products? Please share your thoughts and experiences in the comments.

Source: diabetesdaily.com

The World’s Worst Diabetes Mom: A Book Review

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

By Alexi Melvin

Familiar Face

If you have been an active (or even not so active) follower of the type 1 diabetes (T1D) online community in the past few years, you have likely heard of Stacey Simms. Stacey is a radio host, T1D mom and blogger turned host of the popular podcast Diabetes Connections.

But recently, she’s added a new title to her repertoire: author. Her new book, “The World’s Worst Diabetes Mom,” is currently available for pre-order.

“This isn’t the book I set out to write,” Stacey immediately notes in the introduction. What was initially intended to be a book based on past blog posts turned into something much more unique when measured against other diabetes-related books that came before this one. After an offensive comment made against her parenting skills on social media, Stacey realized that she needed to write a book that acknowledges not just the T1D successes in life, but perhaps moments of pure screw-up that all who deal with diabetes know too well.

This is exactly what Stacey’s book does — and beautifully so. “The World’s Worst Diabetes Mom” does not glamorize the life of a parent of a child with type 1 diabetes or the struggles of a child. The book, in a way, celebrates that the idea of perfection is simply not a “thing” that can be attained while managing type 1 diabetes. Stacey is unapologetic and honest about the lessons she has learned as a T1D parent in a way that makes the reader — whether a parent themselves or a person with type 1 recalling their own early experiences — feel a lot less alone.

Book Review

Image source: Beyond Type 1

Stacey’s charmingly relatable book is organized into chapters based on type 1 milestones in her family’s life and other applicable issues such as: The First Night Home, Pump Start, On-the-Road Adventures, Summer Camp and Social Media Support. The T1D mom takes good care to emphasize that her opinions and experiences are not to be taken as medical advice, and she even includes “Ask your doctor” sections with helpful tips for what to address with your doctor with regard to each preceding chapter.

What Makes It Enjoyable

Although there are many stories and perspectives from people who have been diagnosed with type 1 diabetes available to us today, this book is an important window into the somewhat unexplored life of a T1D caregiver.

Every parent with a child who has type 1 diabetes will undoubtedly remember instances exactly like, or at least very similar to, the ones that Stacey recalls in each of these chapters about learning to manage her son Benny’s T1D, who was diagnosed just before he turned 2. And, even if the reader’s child was diagnosed at a much later age, the emotions that tie into each story – i.e. feelings of inadequacy or failure but ultimately becoming stronger for it – will resonate hugely.

Although the book is written by a T1D parent, people who have type 1 themselves will likely relate to the many moments of confusion and frustration, and will appreciate Stacey’s consistent ability to laugh along the way while always taking the topics seriously.

In this day and age where social media status reigns supreme even in the T1D realm, it is refreshing to read a book that encourages parents, caregivers and T1Ds themselves to resist the pressure to get it right every time. Stacey’s book is hinged on the idea that life is a journey, and that there will be bumps, and that regardless of how many bumps, it is your road to navigate. It’s about the journey.

About the Author:

Stacey Simms hosts the award‐winning podcast “Diabetes Connections,” after having hosted “Charlotte’s Morning News” radio show for many years. She has been named one of Diabetes Forecast’s People to Know, the Charlotte Business Journal’s 40 Under 40, and Mecklenburg Times’ 50 Most Influential Women. She lives near Charlotte, North Carolina, with her husband, two children, and their dog, Freckles.

Source: diabetesdaily.com

Treating Type 1 Diabetes in Bangladesh: Dr. Kaufman and Life for a Child

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

By Francine R. Kaufman, M.D.

Greetings from Dhaka

Traveling over the city by air and then languishing in traffic forever to get to the hotel, I see what now seems typical of a developing country: cars, motorbikes, rickshaws, and people at a standstill jammed up in traffic with horns blaring like a discordant symphony; people living on the streets; old buildings with new structures next to them supported by cranes and rebar trying to reach for the sky.

Yesterday, I was at the main diabetes hospital all day seeing patients. I was with Graham Ogle, who runs Life for a Child and continues to deserve sainthood for his global work in bringing care, education, supplies, and life to close to 21,000 children around the world who likely would perish without his efforts. Graham is so humble and focused; he seemingly knows everyone and everything about the care of children with diabetes in Dhaka, as well as everywhere Life for a Child collaborates with local health care providers in over 40 countries.

Kid

Image source: Beyond Type 1

The diabetes hospital – called BIRDEM – is run by Dr. Bedowra Zabeen, an amazing woman and endocrinologist who is known worldwide for her work throughout Bangladesh. They follow over 7,000 children with diabetes (there are 9,000 total in all of Bangladesh); hundreds come in each day for outpatient care or to be admitted. The Life for a Child program follows 3000 children and young adults (up to age 26) and the Novo Nordisk program helps with another 3000 children. This means few can afford to buy insulin and supplies on their own since there is still insufficient support by the government or insurance programs in this country. From Life for a Child, they can only get regular and NPH insulin and 1-2 blood glucose strips per day. This is how I practiced pediatric diabetes 25-35 years ago. There are a few using newer insulins and even a few with insulin pumps, so if there are resources, families can buy better diabetes care than what is offered by these free charity programs.

Work to Be Done

The patients come through like a torrent. First, a newly-diagnosed child, so emaciated and weak, she could barely stand up. Then 4 children who seemed to be about five-to-six-years old, not adequately treated because they don’t have enough glucose strips, and as a result no chance to appropriately adjust insulin doses. School was a problem for each, either they had to miss a lunch shot or their mother had to come to administer it – most often without first doing a blood test. One was very hyperglycemic because her parents were unable to deny her anything she wanted to eat.

There were also two adorable 17-year-old twin girls, diagnosed within a year of each other, who had just graduated from high school and were waiting to see if they could go on with their education. Despite sleeping late, missing shots, and pretty much de-prioritizing diabetes (the universal story of adolescence and young adulthood), their A1cs were still good, mainly because they had way too many low glucose levels. There were many more routine cases: children taking only two insulin shots per day, having too few blood tests, not having refrigerators to store their insulin (they use clay pots instead), and feeling stigmatized and ostracized.

Then came the really hard cases: a child with severe insulin resistance (likely a gene defect due to too many consanguineous marriages in this country) taking 200-300 units of insulin per day, a child with dermatomyositis (a severe autoimmune disease of the skin and muscles) taking 500 units or more a day and chemotherapy and suffering the crippling joint effects of this rare disease that is most often complicated by diabetes. The fact that her hands were stiff and crippled made it all so much more amazing that she is an artist.

There were a number of pubertal children and even prepubertal children with type 2 diabetes – it’s hard to find someone who is not overweight/obese in Dhaka City, and the children appear to be the most affected. Bangladesh has one of the highest rates of diabetes: 8-10% of the population is affected and it is expected to quickly increase to 13% – and this is mainly Type 2. There are higher rates of kidney complications, but the most difficult aspect of having diabetes in Bangladesh is the stigma, the lack of education concerning its cause (children and their mothers are blamed), and the chance that anyone – particularly a child – can succeed with this disease.

Why We’re Here

Our type 1 diabetes workshop in Dhaka was sponsored by Life for a Child, the Bangladesh Diabetes Association, and ISPAD (the International Society for Pediatric and Adolescent Diabetes), and was organized by Dr. Zabeen. Forty-five physicians and nurses, dietitians, and psychologists from 11 cities and areas across Bangladesh attended our lectures and presentations. Some of the participants flew to Dhaka from the north, took trains for hours, and then battled the Dhaka City traffic to get to the Dhaka Club. It was a parade of brightly colored, sparkling saris since most of the attendees were women; many of the men had red hair and beards from henna staining.

Kid

Image source: Beyond Type 1

Our lectures were intermixed with lectures delivered by Dr. Zabeen, Dr. Azad (who started the field of pediatrics in Bangladesh), and a few other physicians who related the Bangladesh experience in childhood diabetes, pregnancy and diabetes, Ramadan and diabetes, and nutrition and diabetes. They discussed the struggles of managing this difficult disease in an area of our world with unimaginable poverty, very limited access to lab testing, supplies and medications (all with no way to pay for them short of a charity program, like Life for a Child), and in a culture deeply rooted in both prejudice and misunderstanding about diabetes. Schools make no concessions for the children at all, blame is placed on mothers and the children themselves, and they are often denied basic opportunities.

A young, 26-year-old woman who was diagnosed with type 1 diabetes (T1D) at 7 years of age came to speak to the seminar attendees. As a result of having diabetes, she was devalued so her father married her off at age 14. As usual in the villages, she went to live with her husband’s family. Since she arrived 12 years ago, her mother-in-law has not allowed her to have food unless her husband is home – and he works all day. So she fasts all day long, gets frequent and severe hypoglycemia, and often takes no insulin at all. Somehow in the midst of this all, she had a baby 5 years ago, and this little 5-year-old girl was skipping and running around, and adorable.

After our lectures each day, we took selfies with the attendees, and we even danced after my lecture on physical activity. The sway of the saris was mesmerizing and the joy and laughter totally infectious. Amidst it all, their questions and comments revealed how committed they all are to advance diabetes care for children in Bangladesh despite all of the obstacles. It was a struggle to go to the airport, but I somehow sat in the backseat and resigned myself to the stop and go traffic, the veering of cars from one lane to the other, and the constant cacophony of horns. It seemed to fit with my simultaneous feelings of despair and hope – with a great belief in Dr. Zabeen and her teams of amazing health care providers and her patients willing to share their stories.

Source: diabetesdaily.com

GivingTuesday: Donate for Diabetes

Have you heard of Giving Tuesday, a global generosity movement? Learn more and consider donating to a diabetes organization of your choice.
Source: diabetesdaily.com

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