My Afternoon at the JDRF Type One Nation Summit

As promised... though several weeks late.

Several weeks ago I attended the JDRF’s Type One Nation Summit in my local area.  This is the first diabetes event I’ve attended outside of the annual JDRF Walk.  I’ve always wanted to attend an event like this – one that offered the latest in diabetes research and technology, and with speakers ranging from renowned endocrinologists and healthcare providers to celebrity Type Ones.

Ava was diagnosed three weeks after her 2^nd birthday, the day after Father’s Day in 2007.  We were shocked, heartbroken, angry, and scared to death.  We spent 5 days at CHOP – two days in PICU, and three in diabetes boot camp.  Three days to learn how to keep our daughter alive.  I wrote about this journey in two parts: How We Got Here Part 1 and How We Got Here Part 2.

What I didn’t know then was that that was the easy part.  The most difficult part was convincing a 2-year-old that pricking her finger several times a day and injecting her with needles 3 times a day (which later became up to 7 or more for a better insulin regimen) was vital to her and non-negotiable.  What they don’t teach you is dealing with your stress and fear, or your husband’s colossal depression, the inevitable fighting between the parents, or about the isolation.  We lived an hour away from CHOP, and an hour away from the nearest support group at that time.  We knew no one who had been through this.  We knew no one who even had type one diabetes. 

Owen was then in kindergarten, and friends we met through soccer introduced us to another couple in the school district whose daughter had diabetes.  They were wonderful – they gave me their phone number, offered to get together and share information, offered me books on diabetes, and said to call anytime. Still, I felt guilty for “bothering” them – they had been on their journey for over 6 years, and looked to me like they had it together. There was no support group in our area.  I turned to online forums and met parents from all over the country, including Sue – who lived about 30 minutes away with whom I am still friends today.

Today, we are almost 8 years in.  I’ve got this.  The management is second nature.  I calculate carbs like a skilled dietitian.  I can look at just about any food and tell you about how many carbs to bolus for.  I know which foods raise her blood sugar 6 hours after she eats it.  I know that excessive exercise on a hot day requires more checking, and especially overnight to prevent lows.  I know when a site is bad, and when the highs are just from that ice cream she ate 4 hours ago.  I know where she prefers her pump sites to be placed, and I know she doesn’t want people to know she has diabetes.  I help her through the tough days when she hates diabetes.  I help her feel safe on field trips.  I celebrate her triumphs in spite of this bullshit disease.  I try to remember that nastiness is sometimes because she is low, and sometimes because she is high.  I’m in charge of ordering supplies, changing pump sites, keeping the blood sugar log, scheduling appointments, and teaching her about healthy choices.

I never attended a single support group. I often considered starting one in our area, if for no other reason so that she doesn’t have to feel so alone.  I’ve been called on a handful of times by friends who knew someone whose child was just diagnosed.  And those parents are now friends too.  I’ve found a large community of parents via Facebook, and that’s been a blessing – to have friends who understand when you’re having a bad day, who understand your frustration with misinformed people who compare your child to their diabetic cat, who understand your frustration with misinformed people who offer up a cure they've read about somewhere online, who understand your fear when your child is vomiting and you can’t get her blood sugar up, who understand your lack of sleep, and who can celebrate the joy of a good night.  (Side note:  A support group has since started in the area where I used to live and they are enormously successful.)

I have attended the JDRF walks. I wanted to be a part of something big, and contribute to the research that may one day make my Type One daughter a Type None.  It also brought me a sense of inner peace, to walk with these hundreds of people who get it.  My mother owns a restaurant, and we have used that venue for the last two years for JDRF fundraising events that raised nearly $10,000.

The JDRF Type One Nation Summit.  Sue and I attended this event together. We listened to charismatic keynote speaker Brian Herrick, himself a type one since childhood, manager of Strategic Communications at JDRF, and a participant in part of the artificial pancreas program.  He spoke a little about the latest in research, most of which I am familiar with. He discussed at length his experience with the artificial pancreas program, which is NOT a cure, but a very promising program.  The artificial pancreas utilizes two key devices that are already available and widely used by individuals with type one diabetes: the insulin pump and the continuous glucose monitor (CGM). 

Presently, the insulin pump delivers insulin  based on settings preprogrammed by the user but requires the user to enter blood glucose values and total carbohydrates to be consumed (the pump then calculates an insulin “bolus” which must be entered by the user).  Basal insulin (the insulin required to keep blood sugars stable throughout the day) is programmed up to the hour and is automatically delivered every 3 minutes.   The CGM monitors blood glucose levels throughout the day and provides up-to-the-minute readings without the need for finger pricking. The artificial pancreas will combine these two devices and, based on a customized algorithm for each individual, will manage blood sugars for the user without the need for constant checking and bolusing. 

He mentioned Smart Insulin, currently under development and approaching clinical trials.  Smart Insulin, either in pill form or injectable, would be able to detect the body’s changing blood glucose levels and respond accordingly, eliminating the need for testing and bolusing and would not be affected by exercise, stress, or food (this is HUGE). It would offer continuous glucose control without the need for multiple injections (MDIs) or external devices (insulin pumps/CGMs). 

More exciting is the combined efforts of JDRF and ViaCyte – to introduce an encapsulated cell replacement therapy whereby a semi-permeable device is implanted containing the vital cells (which produce insulin) that will behave like the normal pancreatic islet cells and thus eradicate the need for constant testing and bolusing of insulin.  It will be protected from the autoimmune cells that originally attacked the beta cells and caused diabetes.  This is the one I am waiting for.  And clinical trials have already begun in San Diego. 

The rest of this conference entailed two breakout sessions – one with a renowned local nurse practitioner who discussed sports with diabetes, and the other a presentation about the psychological effects of diabetes on both the patient and the family, and how to cope.  We had an opportunity to speak to vendors, and I spoke briefly with a girl who had a diabetes alert dog (DAD) and also with the Animas Insulin Pump vendor, who showed me the latest pump with an integrated CGM.  On this pump screen is the up-to-the-minute blood sugar readings of the CGM, without the need to carry a separate device.  It was awesome.  

Otherwise, Sue and I mostly kept to ourselves, catching up on each other’s lives and discussing diabetes crap.  She had to leave early and I stayed for the final presentation by a woman who had been present all day long, quietly listening to the various presentations and mostly unnoticeable until she stood to speak.  Moira McCarthy Stanford walked up to the podium and introduced herself as the mother of a type one, and a sports writer who began living her dream long ago.  She shared pictures of herself, her daughter, and her family.  She talked about the journey, and about giving her daughter the chance to fly.  I don’t remember now all that she said, but her words were poignant and reached a deep part of me that I have hidden away, brought tears to my eyes, and inspired me.  My daughter, now 10, is just beginning to branch out on her own and I’m finding myself faced with those feelings about letting go, and the fear that accompanies her not being on my watch.  Moira’s words made me realize that my own strength, courage, and faith will lead us down that path that allows her “to fly.”

Diabetes often leaves us, as parents, feeling exhausted and scared, frustrated and angry, and sometimes sad.  That afternoon at the Type One Nation Summit – an event I attended for the technology updates – turned out to be an emotional and healing boost I didn’t realize I needed until I heard Moira speak.  I left feeling an inner peace and a sense of purpose I hadn’t expected.  After 8 years of “I’ve got this,” I realized how much it still matters to connect with others who get it.