Case Number Five…

archive foldersAllow me to introduce myself.

I am case number five.

The case that made people in the audience gasp and shake their heads at the discussion about Glycemic Targets at the American Diabetes Association’s 74th Scientific Sessions last week. I gasped along with them, because up until that moment, I had no idea that I was the anomaly in a study at all.

My pediatric endocrinologist is one of the top researchers (and endos, in my opinion) in the world. I spoke with her at the end of the first day after a terrific presentation about transitioning care through different stages of life she did with Dr. Ann Peters (who is another superstar endo). I had seen her last summer after almost twenty years and it’s always wonderful to connect with the woman who kept me alive when I wasn’t sure I wanted to have diabetes anymore. She’s important to me.

An email popped into my inbox on Saturday from her, asking if I would mind sharing a little more information about my history and if I would be willing to allow her to share my medical history with others – anonymously. I assumed it would be sort of a “Hey, even though you had crappy numbers as a teenager, all is not lost…” speech she would give to her teen patients to motivate them.

I would walk over hot coals or jump out of a plane for Dr. Laffel. That’s how much I feel indebted to her. “Of course,” I responded. “I own my story. I’m not ashamed of it. I’m lucky.” I send the email off and went on my merry way, not realizing how soon I would come to understand just how lucky I was.

Her talk was to be about glycemic targets and the new A1C recommendations that ADA has determined is appropriate for pediatric patients. (The previous? 8.0% A1C. Now? 7.5% A1C. Granted, the higher A1C is barely met by most patients now, but that’s besides the point, right? A topic for another day.)

The second slide of her discussion, as she explained to the standing room only audience, would show case studies of patients and their A1Cs over the years and their health outcome today. I thought to myself: “How cool! This should be interesting!”

Case study one was a female who ran with elevated A1Cs for many years. She’s now wheelchair bound in her 30s, after a stroke and is blind in one eye. Case study two, despite normal A1Cs in his youth, had elevated A1Cs in teen years and twenties, and currently lived with end stage renal disease and neuropathy. Case study three didn’t fare much better, with varying A1Cs after five years of almost perfect A1Cs after diagnosis. Case four made me cringe… she passed away at 28 from DKA after several other complications cropped up.

“Case number five. Born in 1970, diagnosed in 1983, with A1Cs ranging from 9.5% to 14.5% in her teens. She’s kept A1Cs since her thirties at 8.0% or less, and major complications?”

“None.”

As the case info came up on the Powerpoint, the gradual realization that it was me she was presenting was accompanied by the chill that went down my spine.

“I believe that this patient has protective genes. We don’t know what they are, but we’re all looking for them.”

I saw a sea of intelligent heads nodding, leaning in towards each other to whisper their own thoughts about the five cases.

The initial shock of what I was seeing and hearing on the screen passed, and I was glad to be standing against the wall at the back of the room. I didn’t have to excuse myself as the tears burned a trail down my cheeks.

I cried for the first four cases. For the protective genes they didn’t have.

I cried for myself. For how lucky I am. For the protective genes I do have and the harsh reality up on the screen, showing me that I have no business being as healthy as I am with the utter lack of care I chose in my teens. 14.5% A1C? Holy hell. That’s an average of 375 mg/dl. A walking zombie.

As soon as I’m eligible, I’ll participate in the Joslin Medalist study, which looks at individuals who have had Type 1 diabetes or 50 years or more. Have you heard of it? Here’s the link, but I’ll give you the highlights from the page:

Hyperglycemia is a major cause of diabetic vascular and neuropathic complications.  However, a significant number of diabetic patients, known as the Joslin 50-Year Medalists, remain free from various complications such as nephropathy and proliferative retinopathy after 50 years or more of diabetes.

…Genetic studies are underway to determine whether these extraordinary survivors have typical type 1 diabetes or a different, yet unknown type of diabetes.  Data from over 500 people have been analyzed and have led to very exciting discoveries.

I’ve got 19 years to go before I’m eligible, but those who come before me, like my friend, Richard Vaughn, who is part of the study, will help pave the way for what I am hoping will be the discovery of the gene that is the protective factor for me and others, and will hopefully be the beginning of gene therapy for those who do not have it.

I saw Dr. Laffel later that evening at an event.

“So, I’m Case Number Five.”

She nodded, giving me a calculated, questioning look.

“You were in the room?”

I laughed.

“Yep. And thank you for sharing. It showed me how lucky I am. I’m so glad that I was there.”

She smiled, and I knew that smile. It was the one I sat across from in my appointments.

I miss that smile.

“I’m glad you’re here.”

Dr. Lori Laffel and Case Number Five.

Dr. Lori Laffel and Case Number Five.

 

Please note: I received a scholarship from Diabetes Advocates, which paid for my airfare and hotel room and partial ground transportation.

14 comments

  1. Susan Swope

    Interesting article, I am a medalist and am visiting Joslin in August. The concept of protective genes is very intriguing as being a 50 year T1 with no serious complications, you wonder how and why because I wasn’t a good T1 as a teenager either. I am glad to be participating in the Medalist Study and hope it helps the endocrinologists figure out how some people have the protection that they do.

  2. Sarah

    I’m crying as I read your story. I cried as I saw your post during the session. I’m glad that you are Case Number 5. If (and I always have the lurking “IF”) the next 16 years are the same for me, I’ll do the 50-year study too. When I was 16 years old with HbA1Cs of 14 (and there may have been a 16; there sure were plenty above 10), I sure as hell wasn’t thinking about a medal. Nor was I thinking about complications. So…lots of baggage there to unpack, still. Maybe someday there will be a study of that – the emotional sides of having diabetes for 50 years. Even without complications, it would be worthwhile.

  3. StephenS

    This may be the most emotional thing I’ve read all year. I’m thrilled for you that you were able to be there in person. You damn well better make it 19 more years… I’m counting on you! No pressure or anything…

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  5. Shane Clark

    I was also a pediatric patient at the Joslin clinic for many years. I had the awesome luck to be a patient of Dr. Laffel’s. She is without a doubt a gift to the young Diabetic community. Have had type 1 diabetes for 35 years and counting. No complications to date. No doubt a testimony to Dr Laffel, the Joslin Clinic, and Mom and Dad for the years of care and for a lack of a better term nagging about blood sugars.

  6. melissabalandlee

    Powerful. That is just fantastic the way you got to see your reality splashed up on the big screen to really compare where you could be vs where you are. I cry for 1-4, too. But I share in your WTF luck, surviving a decade of 10-15%ers and living to tell the tale. I’ve got 26 years left til my 50 medal. I hope you’re around to kick people’s asses well into your golden and diamond diaversaries.

  7. Cassie

    I bawled reading this. I pray every day my husband and son have those protective genes. My husband has very minor complications from several years of being misdiagnosed as t2. No increase since being correctly diagnosed, so there is hope! Thanks for sharing.

  8. Katy

    I think I’m going to have to convince myself that my family has the protective genes before I wake up tomorrow.
    This is chilling.

  9. Meagan

    I’ve heard rumors about protective genes from a previous doctor of mine. I’ve had a lot of ups and downs due to my diabetes, and he’s rather amazed I’m still living, and quite frankly so am I. When I was diagnosed my sugar was 942. I’ll never forget that number. They said I had been a diabetic for almost 6 months, or at least that’s what they estimated. That was over 8 years ago, and I’ve had no major complications.

  10. Scott E

    I’m not so sure what “protective genes” really means (does anyone?), but I know Dr. Faustman’s research recently revealed that some longtime Type-1’s still produce some tiny amounts of insulin. I guess beta cells are always being created, but in particular cases like yours, the newly-created beta cells get a chance to take a breath or two before they get annihilated by the immune system. This tiny bit of self-made insulin might be the little bit of armor that helped these Joslin medalists become who they are.

    I suspect this is why my story reads a lot like yours. The dates are a couple of years off, but the story and the numbers are pretty much the same. I often look back at my high-school and college days and wonder how I made it through alive — and why one of my HS classmates did not. Then again, maybe I’m being naive, and I could come down with some complication tomorrow. There’s no believing that I’m “out of the woods”… ever. There’s so much yet to be understood.

    And yet, sometimes it seems better not to know. What causes this peculiar longevity… or what causes diabetes in the first place? I used to chalk it up to dumb luck, but research seems intent on trying to find an environmental or behavioral cause. Believing in dumb luck might be better — there’s no blame or “what if”s that way.

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  12. Paul Patten

    I am sure a little insulin production by even small numbers of beta cells would be a factor in longevity; however as one who has lived with this disease for almost 56 years (will be at the end of August) who has no detectable C-peptide there has to be more to survivablility. I also did not live near a major diabetes center as a teenager; although, I had the opportunity to get my diabetes education attending Camp Sweeney near Gainesville, Texas. I think that had a lot to do with dealing with diabetes. By the way when I was a teenager there was no A1C test; so, I have no idea what my A1C was during that time.

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