The Monstering of Diabetes: A digital story

This is a digital story I made as an example for a class project. I used iMovie and the internal microphone on my iPad to create it. 

http://youtu.be/JTkvwJG8WQs

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Nut and Berry Chocolate Drops

Low in carbs and high in antioxidants, these little treats are a favorite in my household. They are the perfect answer for a sweet tooth without sending blood glucose levels sky high. Each drop has about 8 carbs.

  
Ingredients

  • 1 cup Dark chocolate chips (I use Giradelli 60% cacao chips)
  • 1/4 cup whole almonds
  • 1/4 cup dried fruit (I use a mix of dried apricots, craisins, and raisins)
  • 1/4 cup shelled pumpkin seeds

Heat chips in the microwave for 1 minute. Stir and return to microwave for 30 seconds and stir. Repeat until chips are melted, stirring after each heating. Drop onto parchment or waxed paper with a spoon. Let set for 5 minutes. Arrange fruit, seeds, and nuts on each chocolate drop. Let set for another hour, or place in the refrigerator for 10 minutes. Enjoy!

The Big Business of a Cure

The diabetes pharmaceutical industry is big business, and by “big business” I mean “big money.” Every year, Americans spend billions of dollars on insulin, test strips, syringes, meters, etc. I am fortunate to get my son’s insulin and testing supplies free of charge through our insurance company (because as much as insulin and test strips cost, they are still cheaper than hospitalization for diabetic ketoacidosis caused by uncontrolled diabetes). Without insurance, however, our monthly pharmaceutical costs would be in the $3000 range–that is how much the insurance company pays Lilly and Roche for our supplies; costs to us, lowly consumers, would possibly be more.

Given how profitable diabetes is for pharmaceutical companies, many in the Type 1 community doubt the earnestness of those researching a cure. They believe finding a cure would not be in pharmaceutical companies best interests because a cure would cut into profits. So I wasn’t surprised by the many, many negative comments that accompanied an article that showed up in my Facebook feed about Johnson & Johnson collaborating with small, private company Viacyte on its stem cell-based cure. One reader wrote “Hopeful but skeptical. It doesn’t pay to find a cure…” Another wrote “Taking bets that Johnson and Johnson has ulterior motives and will stall the research now that it is involved with Viacyte.”

Honestly, all that pessimism was disheartening and, as much as I hate to say it, made me feel a bit empathetic toward J & J. (That’s something because I am still reeling from Martin Shkreli‘s 5,000% price hike when his company Turing Pharmaceuticals acquired the patent for Daraprim, a drug that used in malaria, HIV, and cancer treatments).

Here are FIVE reasons we should all take heart and think positively about the Johnson & Johnson and Viacyte partnership:

  1. Johnson & Johnson was already a financial supporter of Viacyte, committing $20 million in August 2014 for the future right to evaluate transactions related to its stem cell trials (guess they exercised that right this week!)
  2. Viacyte comes out on top here, acquiring 145 patents and 565 pending patent applications belonging to Johnson & Johnson.
  3. Type 1 is personal for Johnson & Johnson. T1D runs in the Johnson family and Casey Johnson, great granddaughter of founder Robert Woods Johnson I, died of diabetic ketoacidosis (the result of blood glucose levels that are too high) in 2010. She stopped taking insulin.
  4. VC-01, Viacyte’s encapsulated stem-cell replacement technology, is already in phase 1 human trials and it is showing positive results. The FDA has expressed a willingness to fast track approval if all phases are as successful as anticipated.
  5. The VC-01 trial is being filmed for a documentary titled The Human Trial. Viacyte is giving filmmakers unprecedented access to trial participants, the lab, and the company’s research records. The film is backed by celebrities such as R&B artist Usher, and director/producer Lisa Hepner has plans to follow VC-01’s progress to its approval by the FDA. Lisa has lived with Type 1 for 22 years.

Riding on Insulin PA 2016

Over the weekend, my son participated in Riding on Insulin, a snowboard and ski camp exclusively for kids living with Type 1 Diabetes led by pro-rider Sean Busby . The one day camp was held at Camelback resort in Pennsylvania, and is one of more than ten camps held internationally each winter. Accommodations were provided by Great Wolf Lodge Poconos, a big draw for the younger participants.

The camp began with a Friday afternoon orientation at Great Wolf for families–what to expect, how cold weather and exercise in cold weather affect blood glucose levels (BGs), reassurances that kids’ medical needs would be taken care of, and general get-to-know-us chat.

The next morning (at 8:15 am!), the 45 participants were divided into age/ability groups and assigned to one of five to six elite coaches–these are experienced coaches who are all familiar with T1D, many living with the diseases themselves. Junior coaches dispersed among groups to help with instruction. Junior coaches are individuals who have participated in past camps and are good enough skiers and riders to help with instruction.

The first part of the morning was spent learning techniques. The kids did group BG checks every half hour and elite coaches carried back packs filled with glucose tablets and other non-freezable glucose sources to treat hypoglycemia. Participants then took a lunch break, eating a camp-provided boxed lunch consisting of a turkey wrap (gluten free and vegetarian options were also available), potato chips, and an apple. Then it was back to the slopes! The second part of the day was spent skiing and snowboarding down the slopes.

Cole was a first time snowboarder, so he stuck closely to instructors in the training area (which still had a fairly long hill from what I could see in photos). He made it down the slope six times, the last time without falling! I’ve seen the GoPro footage and I can tell you that he took some pretty hard falls, poor kiddo. The kids all did BG checks every time they went on the magic carpet (a moving walkway–the steeper slopes have ski lifts). Cole’s BG stayed pretty high all day, unfortunately. We had a big snow the weekend before camp, and when Cole played outside, we pretty much skipped bolusing (that’s the insulin you take to cover any carbs you eat) and his BG stayed between 80 and 120 mg/dL–great numbers! But I guess learning to snowboard is not as active as sledding because at one point in the morning during camp, his BG was 347! We had done a 1:50 ratio for breakfast. For comparison, Cole’s usual breakfast ratio is 1:10. And if you are new to diabetes, that means you get one unit of insulin for every ten carbs you are eating. We had also set a temp basal of 60%, which means Cole was getting 60% less basal insulin–that is the insulin that drips continuously throughout the day to process the sugar secreted by your liver. Next time, we know to stick with our usual carb ratio and try the reduced basal rate only.

After skiing and boarding ended close to 4:00pm, participants and families gathered at Great Wolf Lodge for a buffet dinner and motivational talks from some of the elite coaches. Cole was excited to learn that one of the elite coaches hailed from Virginia. Unfortunately, Sean Busby was not present for the camp. We received an email that he would be there, but we didn’t see him and at the banquet, they said he wasn’t able to be with us. There was a national snowboarding competition on the mountain that day as well, so I suspect that kept him busy.

Cole gives the camp two thumbs up and is already looking forward to next year’s camp. He loved learning to snowboard (despite his bruised tailbone) and had a blast. I think it was great he was able to meet and hang out with other kids who have T1D–it allowed him to shed his self-consciousness about his disease for a day. Great job, Mollie and the ROI team!

As soon as I convert Cole’s GoPro footage to a format WordPress can handle, I’ll upload a video!

(disclaimer: I am reporting on/reviewing the camp based on my son’s and husband’s reporting–I, unfortunately, was stuck in the hotel room all weekend with food poisoning–Thanks Au Bon Pan.)

 

Snapshot of Type 1 Diabetes

It happened again the other day. I was in a checkout line at the store when my iWatch sounded THE alarm, the loud one warning that my son’s blood glucose levels were low. I silenced the alarm as quickly as I could, but it was loud enough that the woman in line behind me heard it and took notice of what I was doing. She asked about the watch, and I showed it to her. I then volunteered that the alarm was from my son’s continuous glucose monitor. “He has Type 1 Diabetes,” I said, “and when his BG gets low, the alarm sounds. It’s a godsend at night.” She smiled with tight lips. “That diabetes is bad news,” she said. I agreed. “With all the video games and fast food,” she added, “I guess kids today just don’t stand a chance anymore.” The hair on the back of my neck pricked up. “Actually, my son has Type 1–Juvenile Diabetes. It’s an autoimmune disease. Nothing to do with lifestyle or weight.” I waited for her acknowledgement, but her face remained blank. I think I probably destroyed everything she thought she knew about diabetes. Mission accomplished!

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Riding on Insulin

I just registered my son (age 10, dx’ed 7/2013) for the Riding on Insulin snowboard camp at Camelback Mountain Resort in Pennsylvania on January. This is one of the few winter camps exclusively for Type Ones. My son is so excited to finally learn to snowboard. He has been begging us for years, but we’ve always been hesitant because cold weather and exercise can significantly impact blood glucose levels and the likelihood of having a dangerous low on the slopes is very high. But with T1D ski coaches and medical staff on hand with each group of campers, we’ve decided Riding on Insulin is a safe, supportive opportunity. Look for pics posted here in a few months. Ride on!

https://youtu.be/gWBw2VQxbiM

#T1DLooksLikeMe

In honor of National Diabetes Awareness Month, JDRF (Juvenile Diabetes Research Foundation) started a new online campaign, #T1DLooksLikeMe. Instead of raising money to fund T1D research, the non-profit is focusing its efforts during Diabetes Awareness month on debunking misconceptions about who gets diabetes. I’ve written several posts in the past about how often T1D is confused with Type 2 Diabetes (and how angry that makes me). Because of the public health sector’s campaigns to combat the Type 2 Diabetes epidemic, many don’t understand that Type 1 is something entirely different. They don’t connect Type 1 to Juvenile Diabetes, an autoimmune disorder that strikes during childhood and adolescence. #T1DLooksLikeMe helps show the world the faces of Type 1, faces of children and healthy adults who were diagnosed as children. Here are some of the posts I’ve found with the #T1DLooksLikeMe.

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The Mystery Behind Type 1

according to the most recent JDRF e-letter, the number of annual new diagnoses of Type 1 Diabetes in Americans under the age of 20 years increases a whopping 20% between 2001 and 2009. Other countries on other continents are also witnessing upward trend. Scientific American cited research from the World Health Organization Conducted in 2006 that found rates of T1D were increasing in Asian countries by 4% annually and 3.2% in European countries annually.

It is easy to explain the increasing rates of Type 2 Diabetes, as that form of the disease is linked to obesity and lifestyle and it has been well publicized that the world is getting fatter. However, Type 1Diabetes is not caused by body weight or lifestyle. It is caused by an autoimmune disorder that attacks the pancreas. What triggers that autoimmune attack, however, is a mystery…and so are the increasing numbers. 

The same Scientific American article notes that such increases are too great and have occurred in too small a time frame to be attributed to genetics. That leaves most scientists convinced that the culprit is environmental, something children are coming into contact with around the world. 

Under this hypothesis falls several sub hypotheses. One such hypothesis, explains Francesco Egro, is based on the observation that T1D has increased while the incidence of pathogenic diseases have decreased in number–tuberculosis, measles, mumps, to name a few. The thinking is that the processes that regulate the immune system have turned off due to inactivity. Another theory centers upon a vitamin D deficiency caused by less exposure to sunlight (sunscreen use and increase in indoor lifestyles). Many scientists  counter this theory by noting countries such as Kuwait, where there is no increase in Vitamin D deficiency, has seen similar increases in T1D as European countries. A final hypothesis correlates the increase of T1D with the decrease of breast-feeding. It is known that the cow’s milk in formula lacks some of the natural chemical’s in breast milk, but the role of those chemicals is unknown.

Offering an alternative, EAM Gale suggests a spring theory in which the incidence of Type 1 has not increased, but individuals are presenting at a younger age. But the question remains, why the diagnoses at a younger age?

Tis the season for giving

October through December is unofficially known as “the giving season” by non-profit corporations. According to Winter 2011 issue of the Nonprofit Fundraising Survey, over half of non-profits say they receive at least a quarter of their donations during this time and 16% of organizations in the survey said they receive closer to half of their annual contributions during these last three months of the year.

Making charitable contributions has a lot of benefits. Not only does donating to a non-profit make you feel great, but it allows you to have an impact on a social issue you care about. And let’s not forget the tax benefit. Generally, you can deduct 100% of cash donations from your adjusted gross income–the amount of earnings you must pay tax on) up to 50% of your AGI.

If you are looking for a way to reduce your tax bill and feel great about supporting a worthy cause, consider contributing to an organization dedicated to improving the lives of those living with Type 1 Diabetes, or supporting one of the many research projects seeking a cure or improved medical treatment for T1D. Here are some great options:

JDRF (Juvenile Diabetes Research Foundation)–JDRF is one of the only non-profits dedicated to funding research on Type 1 only (not Type 2). Charity Navigator rates the organization 3 out of 4 stars and notes it directs 78.8% of its donations to research and education. To donate, go to http://www.jdrf.org.

The American Diabetes Association works tirelessly to raise awareness of all forms of diabetes…many in the T1D community (myself included) have been critical of the ADA because it often conflates Types 1 and 2 in its Public Service Announcements (PSAs). Still, its cause is worthy. Charity Navigator rates the ADA 3 of 4 starts and notes it spends 67.1% of its revenue on its programs. To donate, go to www.diabetes.org.

Diabetes Action Research and Education Foundation (that’s a mouthful) funds medical research related to diabetes. Charity Navigator rates the organization 4 of 4 stars because more than 96% of its contributions are given as research grants to universities and independent researchers working in diabetes. Two of the projects DAREF has helped fund include Dr. Faustus’ research of a generic prescription drug to reverse Type 1 and Virginia Tech’s research investigating whether a gluten allergy might trigger T1D. To donate, navigate to www.diabetesaction.org.

Joslin Diabetes Center, affiliated with Harvard Medical School, was established in 1898 and has dedicated itself to prevention, treatment, and cure research ever since. It has been at the forefront of diabetes research for over 100 years. It is ranked 3 of 4 stars and 78% of its funding goes toward research. To donate, go to www.joslin.org.

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