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The Improving Outcome For People Living With Type 1 Diabetes

During the Joslin medalist meeting last week, I didn’t say anything.  I wasn’t presenting or doing any kind of networking.  I was invited as “media” (totally in quotes) but I attended as a grown-up child with diabetes, hoping to continue on that path of growing up.

I sat next to a woman named Eleanor (my beloved grandmother’s name) and she had been living with type 1 for 58 years.  She asked to see pictures of my daughter.  She offered me a cough drop after I spent a few minutes trying to clear my throat, and she stuck her hand out to take the wrapper, spying my pump tubing jutting out from my pocket.  “I don’t wear a pump,” she said.  “I do just fine with my needles.  And you appear to be doing just fine with your pump.  Do you need another cough drop?”  I almost hugged her.

As Dr. George King, director of research at the Joslin Clinic, gave his opening remarks, quotes from the medalists were flashing up on the screen behind him.  “I have learned to understand that perfection is not possible.”  “Tomorrow is another chance to do better.”  “Say YES to every opportunity.”

These people were incredible because of what they’ve accomplished with type 1 diabetes.  Hilary Keenan, PhD and pat of the Joslin biostatistics team, stunned me with the stats on this group. Their average A1C is 7.3%, with an average diagnosis age of 11 years old.  Their average age is 70.  The average duration of their diabetes is 59 years.  The most common ages for their type 1 diagnosis are age 6 and age 12. And this group of medalists have a very low rate of proliferative retinopathy and kidney disease.

The amazing Joslin medalists (and some of the Joslin team)
I sat in this room, listening intently, and thinking about my own life.  I’ve had diabetes for 24 years.  Long enough to appreciate where I’ve come from and what I’ve accomplished, and yet still a “rookie” in the eyes of these medalists.

Photo credit to the Joslin team

Not only are they brilliantly healthy, despite their diabetes, but they’re also insightful and wise in that way that only decades of life can bring.  They stood up, one at a time, and introduced themselves to the group.  Their stories made me laugh out loud (like when the lady was talking about her CGM and her pump, and then someone’s phone rang and she stopped to ask, “What kind of meter is that?” and the other woman answered, “It’s a phone?”), made me grateful, and made me cry openly in this room of strangers.

“Eliot Joslin was my first endocrinologist.  He wore a charcoal gray suit and a crisp white shirt.  And the first time I met with him I said, ‘Oh my God, he’s an undertaker!’”

“Diabetes has given me so many opportunities.  I had a chance to spend time with Bret Michaels.”  Pause.  “But I didn’t know who he was.  Now I do, though!”

“I have seen many doctors retire.  I don’t have that option, so I keep finding new doctors.”

One man talked about the party he threw for himself when he reached 63 years with type 1, as part of his 70th birthday party. “I handed out certificates to the people who helped me get here.  And I had one for Eliot Joslin that said, ‘Helped to keep me alive, despite myself.’”

“We do our best.  And to God trust the balance.”

“I was diagnosed when I was one.  My doctors told my parents I would die in my early 20′s.  My parents didn’t tell me this until I was, oh, well into my 50′s.”

“I’m here today, really, because of my wife,” said a man with shaking hands.

“Today, I brought with me my beautiful daughter.  Her name is Joslin. I named her for this wonderful place.”

Me and my fellow Clara Barton Camp alumni, Jane.  YOU ROCK, JANE!!!

But one man broke my heart entirely when he quietly stood up and addressed the group of his peers, his fellow PWDs with more than 50 years under their belt.  “One year, I asked the woman behind the counter how many of us there were.  How many medalists?  And she said that out of the million and a half type 1 diabetics, only about 1000 survive 50 years.  And it wasn’t until I was driving home that I realized what we’re up against.”  He paused and put his hand to his collar, absently touching the ribbon on his medal.  “And that is when I cried.”

Photo credit to the Joslin team.  They also get credit for taking care of me and my friend here.  :)

This whole experience was so inspiring, so humbling, and made me so aware of what diabetes has the potential to affect in my life.  I was born decades after these people were diagnosed, so I know things have changed for the better, as far as treatment options.  I know the outcome for people living with type 1 diabetes has improved by leaps and bounds.  This group of medalists began their journey with glass syringes and twice-yearly finger sticks.  We are a new generation of people with diabetes, and hopefully a healthier one.

In 25 years, I plan to celebrate my 50 years with diabetes.  I can do this.  We can do this.

[To catch a video of the Joslin medalists telling their stories, check out this post.]

*This blog post was originally published at Six Until Me.*


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