Diabetes Love Letter: An Ode to Mandi’s Late Parents

By Mandi Franklin

To my late parents:

It was the winter of 1990 and I was spending the week at my aunt and uncle’s house while my parents were chasing sunsets in the Caribbean. I loved sleepovers at their house – we would play “grocery store,” paint my fingernails, and stay up late.

This time was different…

“She’s drinking so much water. She can’t seem to quench her thirst,” my aunt said to my mother when she called to check on me.

I was so thirsty that I would climb on top of the bathroom sink and gulp water from the faucet like a parched cat. My aunt and uncle knew something was wrong.

Photo credit: Mandi Franklin

My parents caught the next flight home and I was rushed to Sinai Hospital in Baltimore, Maryland.

This is when the perfect world we once knew changed for me and my family.

“She has juvenile diabetes and we need to give her insulin,” explained the ER physician to my parents. Imagine hearing that your little, previously healthy 3-year-old now has a permanent disease that will need to be managed with multiple fingersticks and numerous injections daily.

Confused. Angry. Sad. Guilty. Numb. These are things that I am sure my parents felt at this moment.

Over the next few days, we learned how to cope with my new life with the help of the medical team, nurses, dietitians, child life specialists, and of course family support.

From that day on, my parents vowed to never treat me differently and promised that I would live a “normal” childhood.

Photo credit: Mandi Franklin

Looking back, I admire them for how they tackled this diagnosis and disease. I never felt like I couldn’t do something due to my illness. I was able to dance, play sports, go on vacations, and have sleepovers.

I have been living with type 1 diabetes for 29 years. There are days when I want to throw in the towel and say “OK diabetes, you win.” The other days are just like yours, except with a few extra pokes and a special ability to count carbohydrates.

My parents taught me to live my life and never let my disease get in the way. Because of this, I do what I love and continue to chase my dreams.

In conclusion, don’t ever give up.

Thank you, mom and dad, for raising me to be a strong, independent, resilient, goal-crusher who just happens to also have type 1 diabetes.

Love you always,

Mandi

More about the author on her website and Facebook Page.

Source: diabetesdaily.com

Accepting a New Type 2 Diabetes Diagnosis

One of the toughest transitions in life can be a new diagnosis of type 2 diabetes. Either for yourself or a family member, the initial shock of diagnosis is sometimes hard to take and can require some getting used to.

In this first installment of a four-part series on type 2 diabetes, here are five ways to adapt to a new diagnosis in your family and the best ways not only to cope, but to thrive with type 2 diabetes:

There’s No Shame in a Diagnosis

There is nothing to be ashamed of with a type 2 diabetes diagnosis. Type 2 diabetes is simply the body’s response to becoming insulin resistant or the body’s inability to produce enough insulin naturally (more symptoms listed here). There are many risk factors that contribute to a type 2 diabetes diagnosis, but genetics and environmental factors do play a role. You may be discouraged upon diagnosis, but there’s no shame in having diabetes, and there’s no shame in taking charge of your health and taking care of yourself.

Today Is the Perfect Day to Be Healthy – Start Now

Not next week or next month, or even next year. Today is the perfect day to begin. Once you have a diagnosis, make sure you’re prepared with a glucometer, test strips, and a lancet device to start monitoring your blood sugar. You may also have a prescription for metformin or insulin that should be filled. Your doctor probably referred you to a nutritionist to come up with a meal plan, and maybe they’ve recommended regular exercise. Start small. Include more vegetables at your next meal, and aim for a short walk before bed. Taking small steps to improve your health today will lead to lasting health benefits down the road.

Assemble Your Care Team

This includes both professional and community support. Diabetes affects the whole family, and it’s important to have their physical and emotional support. You will need to enlist the expertise of not only your physician, but also an endocrinologist, and perhaps a nutritionist or maybe even a therapist. Caring family members can offer emotional support during this time of transition, and researching local support groups or diabetes advocacy organizations where you can find community will be a tremendous help in the weeks and months to come.

Don’t Operate from a Position of Fear

Make no mistake, type 2 diabetes is a serious disease that can cause devastating complications if left untreated, but it does not necessarily need to incite fear. You can live a long, happy, and healthy life with type 2 diabetes. This is an opportunity to tune into your body and make healthy, positive changes for the road ahead. Healthy lifestyle choices you make now can prevent complications later on in life.

Think of What This Adds to Your Life

A type 2 diabetes diagnosis is not the end of your life. Instead of thinking in terms of deprivation, think of what this adds (and can add!) to your life. More exercise. More opportunities to go outside. More excuses to walk your dog, or play with your children or grandchildren. More vegetables on your plate. More reasons to see your doctor and keep a closer eye on your health. More reasons to be thankful that you have the opportunity to get a firm grasp on your health in the here and now. Think in abundance and be grateful.

A type 2 diabetes diagnosis does not need to bring misery and sadness to your life. It can be an opportunity to connect with yourself, get in tune with your body, and lead you to start or continue to make healthy choices to prevent complications later on in life. And that’s something to cheers to.

Have you recently been diagnosed with type 2 diabetes? How has the diagnosis affected your life so far? Share this post and comment below!

Source: diabetesdaily.com

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

Parenting with Diabetes: I Taught My Two-Year-Old Daughter How to Be My Caretaker

This content originally appeared on diaTribe. Republished with permission.

By Cherise Shockley

diaTribe Community Manager, Cherise Shockley, shares the story of her diabetes diagnosis and how that diagnosis affected her family

I was diagnosed with latent autoimmune diabetes in adults (or LADA, a type of diabetes between type 1 and type 2) in July 2004, at the age of 23. I was a newlywed, my husband, Scott, was deployed, and I had just finished five-and-a-half years in the Army Reserve. I was placed on oral medication (glipizide), and I began to manage this form of diabetes with diet and exercise, knowing that someday I would require regular insulin for the rest of my life.

In March of 2005, Scott returned from deployment, and a month later we found out I was expecting our first child. Nine months into my diabetes diagnosis, I was carrying my first child; I was temporarily placed on Regular and NPH insulins, because I had to stop taking my oral diabetes medication during pregnancy. At the time, I did not have a continuous glucose monitor (CGM) – the first version of the Dexcom STS wasn’t invented until March 2006,  as my colleagues at diaTribe wrote about here.

My pregnancy was smooth-sailing aside from my diabetes, which took quite a toll on me, but I knew if I did what I could to manage the condition, my little girl would be okay.

Eight months after I gave birth to my daughter, Niya, we said our good-byes to our families and moved from Kansas City, Missouri, to our new duty station in Southern California.

From the time my daughter was one year old, until she was reached two, I was taking oral medication, and my hypoglycemic episodes were few and far between. When I did experience hypoglycemia, I was either at home or at work, and my husband or my coworkers could help me out.

After my daughter turned two, I noticed that my medication was no longer working. With the help of my nurse practitioner, I tried everything in my power to get oral medication to work for me, but it was time to see an endocrinologist.

A few days after my first visit, I met with a nurse practitioner. He told me, “Your beta cells are still present, but we do not want to burn out what little function you have, so I recommend you start taking insulin.” I paused. Although I knew this day was coming, it was like hearing “you have diabetes” all over again.

When we began talking about pump therapy, I asked for something easy to use, knowing that my two-year-old daughter would be my primary caretaker.  I wanted Niya to be able to help me if she needed to.  With my husband working late hours and traveling, we made a decision to teach my daughter how to manage my diabetes. We taught her how to call 9-1-1, how to treat my lows with apple juice, and eventually, how to shut my pump off. In the back of my mind, I wanted her to know how to manage diabetes just in case she received her own diagnosis later in life.

Parenting

Image source: diaTribe

Many parents of children with diabetes share stories of not being able to sleep because they are worried about waking their child up in the middle of the night to check their blood glucose levels. In my family, my daughter was the person I woke up in the middle of the night when I experienced low blood glucose. Before I had a CGM, Niya was the person helping me check my glucose levels and stuffing glucose tabs or candy into my mouth in the middle of the night when my husband was not home.

From the time she was two, my daughter was my primary or secondary caretaker. Scott retired two years ago, so now Niya only helps me out when it’s just the two of us together. If she hears the alarm from my CGM, she asks if I am okay.

I never asked Niya how she felt about her role in helping me manage diabetes; I was nervous to interview my 13-year-old daughter, but I wanted to know how she felt.

Me: How did it feel growing up with a mother with diabetes?

Niya: I was a normal kid. I can eat what I want. I was able to learn how to manage your diabetes and help you when you needed help. I know how to recognize when you are okay.

Me: How old were you when you realized I had diabetes?

Niya: I was four or five. You asked me to film a diabetes video for you.  The hook in the song, “Who has diabetes? Help us stop diabetes,” made me realize that diabetes was a bigger issue. Diabetes was my normal – but the video helped me see that diabetes was also serious.

Me: Was there ever a situation that scared you?

Niya: We recently went to Disney Springs together during Friends for Life. You went really low, and I was scared that you weren’t going to be okay. I didn’t want anything to happen to you when I was with you; I didn’t want to be responsible. Diabetes is a lot of responsibility for a kid, but in some ways, I’m used to it.

Me: That was a scary moment for me, as well. It was the first time in a long time that I was not able to get my blood glucose levels to go up (with glucose tabs or candy). It was important to me to let you shop with your friend while the team at Disney Springs sat with me.

Niya: Thank you for letting me be a kid and not forcing me to live as if I had diabetes. I love you.

Me: Is there anything you would like to say to other children who have parents with diabetes?

Niya: It is sometimes difficult having a parent with diabetes. I now have two parents with diabetes, since my dad has type 2. I want other kids to know that they can navigate it – they will feel extra pressure that other kids don’t feel, but hang in there. When your mother is as special as mine, it’s worth it; diabetes is a big part of my family.

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

LADA – Debunking a Common Type 2 Diabetes Misdiagnosis

This content originally appeared on diaTribe. Republished with permission.By Kara Miecznikowski and Divya Gopisetty What is LADA? How is it diagnosed and treated? Read on to learn more and hear from people living with LADA Just like type 1 diabetes, LADA is a form of autoimmune diabetes. This means that the body’s own immune system […]
Source: diabetesdaily.com

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