I Forget To Remember

Days bleed, literally, into another with diabetes.

We plod along, following the routines we devised or been given to maintain a disease that plots against us. It is routine for us, but this wily condition throws curveballs when we least expect it.

It becomes tiresome. Boredom can set in. Familiarity breeds contempt. Slacking isn’t really an option, but there are days that I make it an option. The consequences may pop up but sometimes, albeit rare, you slide under the radar and nothing bad happens. Those are lucky days.

Diabetes, although I never expected it to be, has become a major focus in my life. I’m steeped in it, marinated in it. Between writing about it, talking about it, creating non-profits to help others raise their voices about it, helping create peer support opportunities for it… Diabetes is pumping through my heart, infusing itself throughout my body.

And yet, I forget. I forget why I do this. Why I care and keep checking and keep tweaking basal rates and seeing doctors and researching and speaking out and trying to break through the glass so everyone can stop looking at diabetes through a dirty lens. 

Then I remember why. 

I do it for her. We fought against the odds to get her here. She asked me yesterday if she will get diabetes like me when she is older. 

I told her that I didn’t know, but if I had my way, the answer would be no. 

But the answer right now if I don’t know isn’t good enough. I remember this.

I do it for him. He is the instigator of ideas, the man who pushes me forward when I don’t think I can go further, the comforter when I am panicking from a low, the one who reminds me that no one is expected to act like a major organ. He makes me remember.

I do it for them. These comrades in arms and insulin. I learn from them and get support. They deserve mine. And they take what they learn from each other and make the world a better place. 

 I do it for her. My brilliant pediatric endocrinologist who helped me to remember when I forgot. And she continues to help others remember when it is needed.

I forget sometimes. And then I remember that I do it for you. Me. Until the day comes when we can all forget diabetes, I will remember.

#DiabetesDivide – How to Close The Gap

sidewalk-crumble-1487848-640x480I’m at the airport, waiting to get on a flight to NYC for The Diabetes Divide: Cities, Inequality, and the Spread of The Disease event hosted by The Atlantic and underwritten by Novo Nordisk US and thoughts about the upcoming discussions have actually prevented me from sleeping soundly. Why? Because we have a divide and the solution to close the gap isn’t simple.

Here’s the description of the event:

Diabetes is a serious public health challenge: 29 million Americans have diabetes, and 86 million more are pre-diabetic. Worse, the disease disproportionately strikes racial minorities, and trends show that diabetes prevalence is growing at an alarming rate in urban areas. How do socioeconomic, racial and geographic factors shape how the epidemic is being addressed in urban communities — and perceived by the general public?

In a town hall event with community leaders, patients, public health experts and more, The Atlantic will consider the social determinants of diabetes, and what they require of the response.

The “patients” on the discussion surrounding Citizens and Diabetes are Kelly Close of Close Concerns and diaTribe and me. We’ve been paired with a physician from Mount Sinai and the VP of Healthy Lifestyles, YMCA New York. The topic will be moderated and truth? I have no idea how the conversation will unfold.

There is a divide. Culture, race, perceptions, health insurance, food deserts, and motivation all play a part in the rise of Type 2 diabetes. These are the questions that caused my insomnia:

  • How do you change a society that values convenience?
  • How do you entice someone making minimum wage to purchase “healthy” food choices when few restaurants and grocery stores offer them at a reasonable price?
  • How do you counter cultural pressures surrounding food? (Imagine a 45 year-old construction worker saying to his friends: “Hold on while I run into the bodega and grab a kale salad with chicken and an apple for lunch.”)
  • How do you test individuals for pre-diabetes when they can’t afford to go to a clinic?
  • How do you explain to the healthcare system that simply telling an individual to lose weight and get some exercise is not going to change behaviors?
  • How do you get someone to take time out of their lives to do diabetes education programs or diabetes prevention programs when they’re working two jobs to feed their family?
  • How do you tell someone to walk a half-hour each day when there is no safe place for them to walk?
  • How do you “market” diabetes in way that truly matters?
  • How do you teach children that Type 2 diabetes does not have to be an inevitability in their lifetime when the latest statistics show that 1/3 of kids and adolescents are overweight or obese and they’re not getting enough physical activity?

Cities Changing Diabetes is a project that was begun by NovoNordisk and other partners looking for solutions. They understand that it takes more than one organization to attack this issue, so they are working with healthcare, non-profits, and social services organizations to combat the rise. It’s also important to note that rural areas have their own issues. Another time, another event.

My type of diabetes was not caused by race, weight, or sedentary lifestyle. (My beta cells left the pancreas party and never came back.) Type 2 diabetes is also not caused by race, weight, or sedentary lifestyle.

I don’t believe in the “You ate too much sugar and you are lazy. That’s why you have diabetes.” These can be contributing factors, but Type 2 diabetes is a metabolic disease that can, in many cases but not all, be prevented with small changes to every day life. (And more importantly, shaming and blaming individuals with Type 2 diabetes is also a cultural issue that needs addressing.)

How do we make a difference? Good question. I’m hoping for answers at this event and ways that I can help my diabetes community become healthier – and maybe prevent the community from growing larger. We’re a great group of people, but I’d like to keep it as exclusive as possible. The cost to enter this club is pretty expensive.

If you want to watch the event, you can register here. (You can see me be nervous live!)



unnamed-8I rode to McGill University on a wooly mammoth with my abacas strapped to my back.

At least, it feels like I did when I talk with current college students. (I didn’t have a cell phone. FaceBook didn’t exist. You wanted to use the Internet? Go to the computer lab.) Yet, despite the years that will separate our convocation dates, we have the same university experiences: not enough sleep, too much to do, new challenges to face, and navigating towards an uncertain future.

For some of us, we add diabetes to the mix to make it fun. (I wish there was a sarcastic font. Then again, most of this blog would use that font. Never mind.)

I didn’t hide my diabetes, but I certainly didn’t raise awareness, advocate for myself, or seek out other T1s to get support at McGill. I didn’t know a single person with diabetes the entire four years of my undergraduate degree. When I disclosed this to the team at the College Diabetes Network  (CDN) last week, my heart ached a little.

Christina Roth, founder and CEO of the College Diabetes Network explains why CDN exists: “In 2009, during my junior year at the University of Massachusetts, Amherst, I started a group on campus so that I could meet other students juggling diabetes and college life. That group changed my life and the many barriers I experienced in creating the group changed the path of my life.”

I needed that peer support back then, just as much as I do now. I’m thrilled that this organization exists and is creating programs so that support is always available for students (and parents and friends, too!).

College Diabetes Week

logo_0This week (November 9 – 13), I’m going back to college. Not on my wooly mammoth, but on the Internet, and I hope you join me on social media.

As part of National Diabetes Awareness Month, CDN is hosting the 2nd annual College Diabetes Week. With over 30 campuses participating in the week’s events, we can join in on the fun (well, at least online)!

What’s this about? Here is a blog by one of the CDN students about College Diabetes Week.

How can you participate?

Use the #CollegeDiabetesWeek hashtag (and you can also use #college and #diabetes too!) to share your thoughts about what it’s like (or was like) as a college student with diabetes. Each day is a different theme:

Monday – Education

Tuesday- Fundraising

Wednesday- Awareness

Thursday Advocating

Friday- Celebrating!

Friends? Yes. Did they know I had diabetes? Only two of them. The others thought I really liked LifeSavers.

Friends? Yes. Did they know I had diabetes? Only two of them. The others thought I really liked LifeSavers.

If you could go back to university, what would you do differently to help educate, fundraise, raise awareness, and advocate? How would you celebrate life with diabetes as a student? What do you want current students to know?

Share your thoughts, views, and ideas on Twitter, Facebook, and Instagram and help CDN make this an amazing #CollegeDiabetesWeek!


#LaceUp4Diabetes – I’m Giving Away These Sweet Laces, Too!

unnamed-5I’m lazy. There. I said it. My cardiologist even told me: “You’re lazy.” (I like medical professionals who don’t beat around the bush.)

I need more exercise. O.K., I need to starting doing some exercise.

Ironically, Novo Nordisk contacted me a few days after my doctor’s appointment and asked me if I would participate in their #LaceUp4Diabetes campaign to show how we can take steps to reduce the risk of diabetes (or in my case, reduce my laziness and my blood glucose levels at the same time!). Of course, I said: Shoelaces?! Count me in!

I’ve got five extra sets of laces and I want to send them to five lucky random people within the next few days, so they can participate in the #LaceUp4Diabetes campaign on World Diabetes Day (November 14th…)

Here’s how you can get these sweet (yep, pun intended) laces:

Take a picture of you in your sneakers. (Points for creativity, you know! Think outside the box… or the sneakers in this case. Please do wear clothes.) Then, by Monday, November 9, 2015 at 5pm:

  • Instagram the pic using the #LaceUp4Diabetes as a hashtag and theperfectdblog in the caption (this way I’ll know it was meant for this giveaway!)
  • Facebook the pic using the #LaceUp4Diabetes as a hashtag and upload it to ThePerfectD’s Facebook page: https://www.facebook.com/ThePerfectD What? You aren’t a fan of this page yet? All the cool kids are fans. Come jump off a bridge with us!
  • Tweet the pic using the #LaceUp4Diabetes as a hostage and mentioning @theperfectdblog in the tweet. Don’t follow me yet? Follow me. I’ll lead you down the primrose path or the yellow brick road or the rabbit hole, but I promise it will be fun!

I’ll select five lucky people based on creativity and ingenuity and the results from the swimsuit competition.  

I’ll announce the crazy people who participated and won on Tuesday, November 10th.

#LaceUp4Diabetes – I’m Giving Away These Sweet Laces, Too!If you’re selected, I’ll ask for your email and mail address and I’ll ship these laces out to you ASAP so you can have them by November 14, 2015.

You don’t have to have diabetes to participate. You just have to want to help take a single step towards diabetes awareness. 

As for me, I’m going to take a step. I’m joining a gym and will make it a priority to work out three days a week, even when I’m traveling. I’m packing my sneakers with the laces that remind me that I have the power to help myself…

Disclosure: Novo Nordisk sent me six pairs of shoelaces with no instructions. I’m doing this giveaway of my own free will and sending these to five people (because I kept a pair and laced them up on my sneaks…) of my own money (which I wish was free). They didn’t ask me to write about this. They didn’t ask me to share anything. We are a community. Sharing and helping and supporting is what we do. 

If you want to find out if you’re at risk of diabetes: AskScreenKnow.com

If you want to get a personalized support program for people who live with diabetes – and their caregivers: Cornerstones4Care.com

If you want to learn more about Novo Nordisk: novonordisk-us.com

Take a step, take a photo, win shoelaces. Go!


7 Diabetes Clinical Trials (Plus ONE!) Recruiting Right Now…

elixir-1312949-639x468When we participate in clinical trials, we help move our research ahead faster… and that means timelines for better devices, drugs, and services for diabetes management are shorter.

I know a lot of people complain (and rightly so!) that trials don’t happen near where they live. Here are some trials that have a lot of locations and others that may only have one or two, but need our community’s help.

If you’re interested in participating in a clinical trial or learning more about it, click on the title of the study which will bring you to clinicaltrials.gov – you can get details on inclusion/exclusion criteria and who to contact to enroll in the trial or get further information. 

Unified Safety System (USS) Virginia Closed-Loop Versus Sensor Augmented Pump Therapy for Hypoglycemia Reduction in Type 1 Diabetes

This is a randomized, controlled trial of Unified Safety System (USS) Virginia closed-loop versus sensor-augmented pump (SAP) therapy for hypoglycemia prevention in subjects with type 1 diabetes and hypoglycemia unawareness and/or risk for hypoglycemia.

Device: Diabetes Assistant (DiAs) (Unified Safety System (USS) Virginia)

Subject will participate in (2) 24-hour study insulin pump and DiAs training session. At the conclusion of each training session, subject will wear the equipment at home for a total of 5 weeks.
The purpose of this study is to evaluate the effectiveness of the control system in reducing hypoglycemia by comparing, in a randomized study, 24 hour control with USS Virginia versus sensor augmented pump (SAP) therapy in subjects with type 1 diabetes and hypoglycemia unawareness and/or risk for hypoglycemia.
Please refer to this study by its ClinicalTrials.gov identifier: NCT02302963
Locations: Stanford University in CA and University of Virginia in VA

Afrezza Safety and Pharmacokinetics Study in Pediatric Patients

This study is to assess the safety and tolerability of Afrezza (inhaled insulin) in children ages 4 to 17 years with type 1 diabetes mellitus (T1DM). In addition to safety and tolerability, they will assess:

  • To assess the ability to titrate the prandial and supplemental doses of Afrezza at each meal.
  • To assess pharmacokinetics (PK) following a prandial dose of Afrezza in children ages 4 to 17 years with T1DM.

The trial locations are in Aurora, Colorado (site # 80045) and Gainesville, Florida (840002).

Contact: For site information, send an email with site number to Contact-Us@sanofi.com

Dapagliflozin Evaluation in Patients With Inadequately Controlled Type 1 Diabetes (DEPICT 1)

The purpose of this study is to determine if adding dapagliflozin to insulin is a safe and effective therapy to improve glycemic control in patients with type 1 diabetes. Phase III trial is for Farxiga (the brand name), which is currently being used by people with Type 2 diabetes.

Please refer to this study by its ClinicalTrials.gov identifier: NCT02268214

Study is all over the US: AR, CA, CO, FL, ID, IA, KY, LA, ME, MD, MI, MN, MO, NV, NY, PA, TN, TX, UT, WA and in other countries, too!

Efficacy, Safety, and Tolerability Study of Sotagliflozin as Adjunct Therapy in Adult Patients With Type 1 Diabetes Mellitus Who Have Inadequate Glycemic Control With Insulin Therapy (inTandem1)

This Phase 3 study is intended to demonstrate superiority of either Sotagliflozin high dose or low dose versus placebo on glycosylated hemoglobin A1C (A1C) reduction at Week 24 when used as an adjunct in adult patients with type 1 diabetes mellitus (T1D) who have inadequate glycemic control with insulin therapy. SGLT1, SGLT2

Please refer to this study by its ClinicalTrials.gov identifier: NCT02384941

Study is all over the US: AL, AR, CA, CO, FL, GA, HI, IL, KS, KY, ME, MD, MI, MO, NE, NV, NY, NC, OH, OK, SC, SD, TN, TX, VA, WA, WI and all across Canada, too!

Contact: Lisa Sherman (281)863-3228 lsherman@lexpharma.com

Continuous Glucose Monitoring in Women With Type 1 Diabetes in Pregnancy Trial (CONCEPTT)

The primary objective of the study is to determine if RT CGM (Real Time-Continuous Glucose Monitoring) can improve glycemic control in women with T1D who are pregnant or planning pregnancy without substantially increasing the rate of hypoglycemia.

Please refer to this study by its ClinicalTrials.gov identifier: NCT01788527

Studies are currently accepting enrollments across Canada and Europe. The only U.S. location is California. 

Contact: Sonya Mergler, BSc 416-480-5627 conceptt@sunnybrook.ca
Contact: Asma Qureshi, MPH 416-480-5629 conceptt@sunnybrook.ca

A Euglycemic Insulin Clamp Study in Type 1 Diabetic Patients With Oral Insulin (ORAMED)

ORAMED has developed an oral insulin that, in preliminary studies, has shown promise. In the present study investigators will perform a pharmacodynamic/pharmacokinetic study to evaluate this novel insulin preparation as a potential therapeutic option in diabetic patients.

Each subject will be studied on three occasions with an interval of 3 days to 4 weeks between each study. During each study subjects will receive: (i) two 8 mg ORAMED capsule containing insulin; (ii) three 8 mg ORAMED capsules containing insulin; (iii) one 16 mg ORAMED capsule containing insulin. If the fasting plasma glucose is >200mg/dl on the procedure day, the procedure will be rescheduled.

Please review the detailed information as this is an intensive trial.

This study is being done at The University of Texas Health Science Center at San Antonio, TX.

Please refer to this study by its ClinicalTrials.gov identifier: NCT02535715

Contact: Ralph A DeFronzo, MD 210-567-6691 defronzo@uthscsa.edu  
Contact: Monica Palomo, BS 210-567-6710 palomom@uthscsa.edu

A Study to Evaluate the Effect of Camicinal on Gastroparesis Symptoms in Type 1 and 2 Diabetic Subjects With Gastroparesis

This study is a randomized, double-blind, placebo controlled trial designed to confirm the symptomatic effects of camicinal treatment vs. placebo, on gastroparesis symptoms in type 1 and 2 diabetic subjects with gastroparesis. The primary purpose of this study is to determine if a low-dose of camicinal (25 milligram[mg]) for 12 weeks of repeat administration improves gastroparesis symptoms.

Please refer to this study by its ClinicalTrials.gov identifier: NCT02210000

Locations include: AZ, CA, FL, GA, MD, MA, MI, NV, NM, NY, NC, OH, SC, SD, TN, TX, UT, VA.

Contact: US GSK Clinical Trials Call Center 877-379-3718 GSKClinicalSupportHD@gsk.com  

Plus One More…

I am putting this here because fertility can be impacted by diabetes and this may help our male diabetes community members.

Atrasentan Spermatogenesis and Testicular Function

This study is being conducted to evaluate the effects of Atrasentan on sperm production and the function of the testicles in male subjects with Type 1 or 2 Diabetes and Nephropathy.

Please refer to this study by its ClinicalTrials.gov identifier: NCT02118714

Locations: CA, IL, LA, NY, OH, PA

Contact: Melissa Wigderson, MD 847-393-5607 melissa.wigderson@abbvie.com
Contact: Ioanna Mantika Ioanna.Mantika@abbvie.com