When Devin Kennedy-Puthoff was diagnosed with type 1 diabetes two decades ago, it wasn't just the initial diagnosis delay and confusion that presented the most challenge for him and his family. It was a dual diagnosis of both T1D and bipolar disorder within three days that set into motion a tragic story, shaped by systematic failures that eventually led to Devin's death in November 2016 at age 41.

Adrienne Kennedy of NAMI

Today, his mother Adrienne Kennedy is president of the National Alliance on Mental Illness (NAMI), the nation's largest organization focused on mental health issues, and she sees herself serving as Devin's voice in striving to improve life for those struggling with these issues. While questions remain about the circumstances of her son's death, it's clear that his diabetes and bipolar disorder were key factors.

"He was taken hostage by his illnesses, and they double-downed on each other," she says. "Diabetes in itself became a straw man, where they were treating it and not looking for the psychiatric illness that's so obvious, and (they were) not managing the whole person."

Psychosocial aspects of life with diabetes are thankfully becoming more recognized in recent years with the American Diabetes Association and JDRF both putting programs in place to help address depression, diabetes distress and burnout. While this is not to the level of support Devin would have needed, his mother still says it's refreshing to hear that these long overdue changes are happening.

 

A Near-Missed Diabetes Diagnosis

It was January 1999 and the Kennedy family was living in California when Devin ended up in an Orange County emergency room after not sleeping for five days. He was experiencing what anyone with diabetes would probably recognize as key signs of T1D onset. He was 23 at the time. The hospital staff gave him Benadryl and told him to go home, without checking his glucose levels or mentioning anything about diabetes. He ended up back in the ER soon after and -- according to his mother -- was in a "full psychotic state" and had to be restrained. He was eventually diagnosed with bipolar disorder, but still diabetes wasn't brought up.

Devin Kennedy-Puthoff

Only three days later did a different doctor, an endocrinologist who happened to work in the hospital, do a blood sugar check and quickly recognize type 1 diabetes. Devin’s A1C level was in the low teens at that point – astronomically higher than the normal, healthy range.

"The fact that it took that long is outrageous," Kennedy says. "How easy would it have been to just do a blood sugar check before it got so bad? We really need a national campaign where anyone who walks into an ER gets a blood sugar check. There shouldn't be this lag in diabetes diagnosis, and that's important for everyone, not just those who are experiencing severe mental illness."

In those early years before Devin reached his 30s, Kennedy says their family wasn’t struggling to afford medications or diabetes care needs, but Devin did take on odd jobs in part to earn money to buy his insulin. This took a toll on him, and as time went on, misinformation about diabetes further compromised Devin's health.

She wishes he would have found peer support that could have helped him both on the diabetes and bipolar front. If he'd found others who "got it" as to what he was living with, maybe the things would have turned out different.

 

Battling Bipolar Demons and Rationing Insulin

As it was, Devin’s mental health woes made diabetes management almost impossible at times, Kennedy recalls. His delusion and psychotic states were sometimes so extreme that he believed he could actually cure himself of T1D by not taking insulin.

His mother still believes that misinformation and stigma that exists in the general public about diabetes -- particularly the differences between T1 and T2 -- played into that over the years. She recalls one of her son's friends at one time sharing that Devin's diabetes could be managed with diet and exercise alone, just like a family member of that friend had done. Clearly, that friend was talking about type 2 specifically, but Kennedy fears it all influenced her son's thinking when he was struggling with mental health issues.

"The rage that I have about social chatter on diabetes, and treating the two as the same disease... is almost indescribable," Kennedy says. "It's just ridiculous that people are led to believe this."

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It all played into Devin rationing insulin, she says.

In 2007, the family learned their son (in his 30s at the time) had not filled an insulin prescription for three months in an effort to achieve extreme insulin rationing. That led to a hospital stay for DKA-level high blood sugars, and because he wouldn't consent to insulin dosing and was becoming violent, the hospital staff kept transferring him between the palliative care and psychiatric care units. Finally, they were able to restrain him and dose insulin despite his objections.

He was eventually released, but it all came crashing down in 2008 when he was arrested and incarcerated on state and federal felony charges, and spent time behind bars. That's a horror story in itself, Kennedy recalls, in that the Texas prison system was inadequate for diabetes care on its own, but even less equipped to deal with someone living with a serious mental illness. There were times when Devin couldn't get insulin behind bars despite experiencing high blood sugar symptoms, and times when he knew he was going Low but also couldn't get assistance.

Throughout those years, his A1C levels remained in the high teens and Devin was experiencing complications, from neuropathy and kidney damage to retinopathy that led to him becoming legally blind.

"He was battling psychosis medication needs as well as insulin needs, and no one seemed to recognize that they were tied together," Kennedy says. "There are very few doctors with that integrated professional care expertise, for psychiatry and internal medicine -- or diabetes specifically. That is what we needed."

His mental health deteriorated over the years to the point where he ended up in anosognosia, a state of complete lack of self-awareness about the condition or disability a person is living with.

In the end, it was November 2016 when her son's body was found in Austin, TX. Devin may have died weeks before, Kennedy says, and his cause of death remains a mystery and is listed as "natural causes." From what authorities have pieced together, they believe it was most likely a diabetes-related hypoglycemia or related issue that led to his death.

But there’s no clear answer and the family blames the system -- in part, because they were never told about sudden “dead in bed" syndrome as a result of low blood sugars. That is what Kennedy believes took her son just after his 41st birthday.

 

NAMI: Bringing Mental Heath to the Forefront

Now as a leading national advocate on mental health at NAMI, Kennedy shares her family's tragic story in the hopes that it can help others experiencing these issues. While it may be an extreme example for some, the message is valid for anyone in the Diabetes Community that mental health is important, but it's too often overlooked by healthcare professionals as well as PWDs (people with diabetes) themselves, who may not recognize what they're going through.

That’s why Kennedy is encouraged to see efforts to improve the psychosocial aspects of diabetes care, and also why she promotes the NAMI efforts -- especially during May which is Mental Health Month. Their current WhyCare? campaign aims to demonstrate that mental health treatment and services are not just for a few folks on the fringes, but are critical to millions of people, families, caregivers and loved ones affected.

Untreated mental health issues are so often connected to other ailments – like diabetes – and sadly play a role in public tragedies like the rash of school shootings in this country.  

To bring these issues to the forefront, NAMI is encouraging people to share their own stories, participate in awareness events and fundraisers around the country

"I am the legacy my son has left," Kennedy says. "I'm his voice now and it's why I do all of this. The system failed our family in so many ways over the years, and it didn't need to be that way."