34 Responses

  1. Anne Findlay
    Anne Findlay January 6, 2010 at 5:33 pm | | Reply

    While I agree that this was very tragic for her and her family, it did not actually make me fear for my own health. When I am in the grips of a severe low I might feel like I am going to die at any moment; but otherwise I do not fear that diabetes will take my life in such a manner. Maybe I am naive or lucky or in denial but that’s how it is for me.

  2. uberVU - social comments
    uberVU - social comments January 6, 2010 at 6:02 pm |

    Social comments and analytics for this post…

    This post was mentioned on Twitter by DiabetesMine: New [Blog] A diabetic’s take on Casey Johnson’s death #diabetes…

  3. Lucinda
    Lucinda January 6, 2010 at 6:02 pm | | Reply

    Having just gotten my husband out of the hospital with skyrocketing sugars, gall stones and a stomach ulcer (gall bladder can not be removed safely until or unless sugar is well controlled)….this hits home to me very much. I frequently fear that what has happened to this beautiful young lady may happen to him as well, although their lifestyle choices are somewhat different (does drink, but no drugs)….the diabetes complicates everything and makes many days quite frightening for me as well. I also pray with them that diabetes is moved from the ‘low priority condition’ to something truly to be dealt with appropriately by all medical providers concerned for each patient.

  4. Nan
    Nan January 6, 2010 at 6:06 pm | | Reply

    great post, Amy! truly a sad end to a life…and, yes, makes us D moms shudder too…i mean there’s a lump in my throat right this minute. not fun to see the negative possibilities, for sure. but maybe it WILL bring more light upon diabetes and the need for a cure.

  5. June S
    June S January 6, 2010 at 6:19 pm | | Reply

    Beautifully stated, Amy! I do feel sorry for this woman and her family. From what I read, she had a “double whammy,” in that she was diagnosed with Type I diabetes as a young child, and also was a lesbian. Though I happen to be straight, I believe that homosexuality is not so much a choice as it is something biological. It is definitely more difficult, in our society, to be accepted if one is homosexual. There is also a stigma attached, in some way, to having a chronic illness like Type I diabetes. Unless you live with it, you don’t know what it really feels like – day in and day out. God bless Casey Johnson’s family. May her soul rest in peace.

  6. Kerri.
    Kerri. January 6, 2010 at 6:45 pm | | Reply

    (Bah – my first comment was eaten. Trying again!)

    What I was trying to post is that I think this death was obviously a tragedy – 30 years old and now dead. But to jump to the immediate conclusion that just because she had diabetes means that this death was diabetes-related is premature. Until a coroner’s report comes back, I’m not going to assume. I’m also not going to be shuddering in my shoes, despite the fact that, like Casey, I am 30 years old with over 23 years of type 1 diabetes under my belt. Unless we are doctors – her doctors, at that – we don’t know what happened. We can’t say what would be “likely” or not. And even if it was related to her diabetes, we still don’t know the whole truth.

    I hope this situation helps to raise awareness for type 1 diabetes, but I hope every parent of a kid with diabetes sleeps well tonight. Parents of kids with diabetes have enough to worry about. So do the PWDs themselves. To lose sleep at night over the tragic death of a young woman who had a drinking problem, a substance abuse problem, and who lived under the microscope of TMZ is sad, but irrational because her life is not ours. Her fate, we hope, is not ours.

    I send my condolences to her family.

  7. esnouffer
    esnouffer January 6, 2010 at 6:56 pm | | Reply

    “But I’m one of those people who likes to believe that growing up with Type 1 diabetes changes you, makes you stronger, gives you a deeper sense of the value of life…”

    I guess we could say that for all chronic and debilitating illnesses, but is sounds a little pollyanna to sum up managing a serious illness in such a way. Patients, families and medical practitioners grapple with T1 and T2 diabetes compliance everyday! Thousands of studies have proven that the psychological effects of diabetes is formidable. Disease doesn’t necessarily make one ‘stronger’ and the exceptions are those who embrace adversity.

    Who knows what really happened to Casey Johnson, putting aside her “enfant terrible” status? Perhaps her case will put more emphasis on T1 self-care issues and depression and/or research dollars for a cure.

    I meant to ask – Did you “grow” up with diabetes?

  8. Rachel
    Rachel January 6, 2010 at 7:10 pm | | Reply

    I think it is important to note that emotional and mental health plays a role in how someone manages their physical health. Someone can have it all, but if they’re not happy with life, they’re not going to take care of themselves. It may turn out that Casey’s death was exacerbated by her type 1 diabetes, but that substance abuse is what actually killed her.

  9. Patricia J
    Patricia J January 6, 2010 at 7:21 pm | | Reply

    My 2 year old son was diagnosed with type 1 last year so seeing stories like this does make my skin crawl. But then I look at the lifestyle she was leading (drugs and alcohol?) and I remember that proper care of diabetes can mean a long and healthy life.

  10. homer jones
    homer jones January 6, 2010 at 7:37 pm | | Reply

    Cutting off a 30 year old type 1 diabetic with emotional problems and addictions is tantamount to murder. The result was inevitable. It seems to me (without knowing the details) that this family had more money than common sense.

  11. Scott
    Scott January 6, 2010 at 8:25 pm | | Reply

    opps looks like my post was also eaten… damn web is hungry this evening. Wonder how many carbs?

    Anyway my post was also about “But I’m one of those people who likes to believe that growing up with Type 1 diabetes changes you, makes you stronger, gives you a deeper sense of the value of life…”

    I was diagnosed in 1970. The memories I have, tho I have no direct memory of anyone actually saying this, are that I had a disease, I would always have this disease and it would kill me, probably before I could graduate college. Kids pick up a lot of things from adults talking when they don’t think that child is listening. For me, I’m certain that contributed my depression and I had a “why bother? I’m going to die anyway” mindset for longer than I really want to think about.

    Having a disease like this (or anything even remotely similar) as a child does not inherently make you stronger. That can only happen when you have a support network that lets you know that you can still play, that there are reasons to “bother” and that you are normal. It is just that your particular flavor of normal is that you have diabetes.

    It is only recently that these types of support have started to appear and it is mostly thru sites like diabetemine, tudiabetes, diabetes daily etc that have let not only the patients, but their parents learn that they are not alone in this and that they have resources to be able to draw upon the experiences of others in exactly their situation. I am so grateful that these resources exist, it breaks my heart to hear of another child diagnosed.

    I emerged stronger. However while I was still in that mindset, I was weak. Barely maintaining a negotiated peace with an adversary that never slept. It was a fight, one where the best I could reasonably hope for was a draw.

    I don’t fight it like that anymore. I do the best I can today knowing that if I do that, then tomorrow will be the best I can make it.

    And that’s ok.

  12. Lyrehca
    Lyrehca January 6, 2010 at 8:38 pm | | Reply

    Ditto and bravo to Anne’s and Kerri’s posts.

    While I don’t want to speculate prematurely, the fact is that Casey had a history of major, longterm drug and alcohol abuse, as well as some serious judgment issues. Her death does not make me worry that the same thing will happen to me.

  13. Lili
    Lili January 6, 2010 at 9:13 pm | | Reply

    I just want to note that MEs will still choose a cause of death even if the results are somewhat inconclusive, and given her history of Type 1, it will probably be called diabetes-related in the absence of other evidence. Because blood glucose goes down to 0 pretty quickly after death, there’s likely no way now to really tell if her death was diabetes-related in the absence of DKA (which they can test for). You just can’t tell whether bg was high or low when someone died unless there’s a witness or other evidence (like bg meter) once that much time has passed. So just be aware that even if they do list diabetes as responsible to her death, it still may just be a guess.

  14. Chris Harper
    Chris Harper January 6, 2010 at 9:15 pm | | Reply

    I like Kerri’s post.

  15. the poor diabetic
    the poor diabetic January 7, 2010 at 7:19 am | | Reply

    Yes her death was a combination of several factors non of which are any good. what a waste you would think that someone with all that money and with a child to boot would have something to live for and take care of themselves but like you said AMY having everything is far from everything and money does not buy you a healthy life.

  16. Katie I.
    Katie I. January 7, 2010 at 7:44 am | | Reply

    I agree with Lili– we’ll never know. I heard already that not a lot of prescription drugs were in her body when she died (excluding insulin, because I don’t think they can test for how much you might have in your body since you metabolize it immediately?), and that she had been dead in her house for days before she was discovered. I also heard that she had syringes all around her when they found her. Not sure how much of all that is true, but, given the troubled life she led and how dangerous insulin can be in the wrong doses, I don’t think it’s entirely out of the question that she could have overdosed on insulin. My heart goes out to her family.

  17. Sara
    Sara January 7, 2010 at 8:07 am | | Reply

    I agree with Kerri and Anne. While Casey’s death is tragic, it really did not make me question my health or worry that the same thing would happen to me.

    Making a statement such as “I can’t imagine a Type 1 diabetic out there who isn’t shuddering in their shoes. She was only 30 years old, for goodness’ sake, and despite the drugs and alcohol, she’d likely be alive today if her diabetes hadn’t played some role.” seems quite sensational and no better than the tabloid headlines we read on TMZ.

  18. Beth
    Beth January 7, 2010 at 8:20 am | | Reply

    I was talking about this with a friend this morning – she reminded me of the quote, “That which does not destroy me makes me stronger,” and said that is how she always thinks of T1 diabetes.

  19. wageslave
    wageslave January 7, 2010 at 9:58 am | | Reply

    No, the death of this woman did not make me quake in my boots. It did not scare me. It did make me sad. This was not a “dead in bed” or otherwise unexplainable/sudden/unexpected diabetes-related death. if she hadn’t had diabetes, she probably still would have wound up dead from too much partying, drugs, booze and other lifestyle elements.

    A diabetic person who takes care of themselves and their diabetes and suddenly winds up dead — that would scare me. A diabetic person who drinks, drugs, parties, and doesn’t take their insulin/other medication and winds up dead — that does not scare me.

  20. Marco Bianchi
    Marco Bianchi January 7, 2010 at 12:49 pm | | Reply

    I have the previlege of being a pediatric diabetes nurse educator and a type1 diabetic living with the disease for 30 years. I was diagnosed as a kid, and do agree that diabetes does change us. The question is, in what way.

    I believe 3 kinds of people exist. Some do fine and go on with their lives, others live a life event that transforms them into something new (such as myself), but i also do see some that just can’t cope with their own loaded lives that has just been assaulted by a diagnosis of T1DM. all 3 kinds can have a change of situation, or lets call this a reversal of fortune. I can recall my own period of having a poor control, but i did “wake up” from this and returned toward a better path. I am always hopefull that people can do better, but generally when one sphere of life is a mess, so are all the others. Diabetes self-management is no different.
    One thing is clear, poor glycemic control is damaging, but don’t blame the diabetes. Blame the person.

  21. Kassie
    Kassie January 7, 2010 at 1:43 pm | | Reply

    As a d-mom, I worry more about dead-in-bed than I did when it was just me. But even so, that’s one of those struck-by-lightening scenarios, so I don’t give it too much thought (fearful thought or otherwise). Casey’s death is sad, but it doesn’t have me shaking in my boots. A life lost to drugs and alcohol is scarier to me as a mom – the diabetes doesn’t enter into it. for me.

  22. Michelle
    Michelle January 7, 2010 at 8:37 pm | | Reply

    Thank you, Amy. You touched a nerve. Nobody is perfect and all it takes with T1 is a little slip, a glance the other way at a crucial time. I appeciate the upbeat folks here who don’t believe that, but you touched a nerve in me. I too, mourn for Casey Johnson and her short life.

  23. Beth
    Beth January 8, 2010 at 10:47 am | | Reply

    Amy, we seem to be in the minority here, but I admit that I had the same exact reaction to the news that you had. (I’m the “Beth” who commented on Casey’s death after your JNJ post a few days ago.) For me, it wasn’t just Casey’s death, but there were 2 other untimely deaths of T1 diabetics that I had heard about this year. One was a 27-year old patent attorney who worked in the same place as I do (it’s a big place). The news of the co-worker’s death was sent around our institution, and all it said was that his wife found him dead in bed and that he had T1 diabetes. I never heard anything else about it. Then there was someone else (from my city I think?) who I had read about. Again, no details. And, finally, with this latest news, it just really got to me. I agree with the other postings as well, that Casey’s sad death was probably due to problems with substance abuse, but most likely, we will never find out what really happened. Everytime I wake up in the night drenched in sweat with a very low BG, and I feel so groggy that I can hardly drag myself to the edge of my bed to get my meter and open my nightstand drawer for tootsie rolls, I do wonder how common it is for people with T1D to die in bed. I know I run the risk of getting a barage of “if you take care of yourself you will not die from T1D” comments, but for some of us, no matter how hard we work at it and how good we are, our sugar fluctuates wildly and unexpectedly. Were these people on pumps? Have you ever given yourself insulin while dreaming that you were eating a meal (I have, in fact, done this)? I don’t want to scare people or parents or be irrational, but it is scary and untimely deaths like this one remind us of that. It happens. I think that for those of us living with T1D, having more detailed information about how and why things like this happen could help us prevent similar tragedies, but, this type of information is hard to find.

  24. Lee Ann Thill
    Lee Ann Thill January 8, 2010 at 10:48 am | | Reply

    Marco, blaming the person is exactly what I argued against yesterday. Blaming a person with obviously serious mental health and substance abuse problems doesn’t make sense and it’s not compassionate. I think one of the real failures is the diabetes care delivery system with negligible mental health intervention services, and from all accounts and personal experience, the absence of psychosocial PREventative services. (Today’s post: )

    Those among us who can’t cope shouldn’t be held solely responsible for having difficulties managing this unrelenting disease. It’s important to recognize that the very nature of diabetes management at present is not easily conducive to success, and blaming individual who struggle is only going to perpetuate that.

  25. Marco Bianchi
    Marco Bianchi January 8, 2010 at 12:43 pm | | Reply

    @ Lee Ann
    I think you are saying the same thing but in another way. If one has serious mental health issues, all aspects of ones life is undone. Be it substance abuse (not use), relationships, and if one is diabetic as well, so will be it’s management. Therefore, diabetes is not the issue. I get irritated when one lumps all of their life problems upon diabetes, in figuring that if only diabetes is well maintain their life would be perfect. That is crock! If one has problems, please get help! but i am adamant on this, don’t blame the diabetes. This has nothing to do with diabetes, all has to do with the person.

  26. Jeanette
    Jeanette January 10, 2010 at 5:14 pm | | Reply

    Reinforcement that you just cannot underestimate diabetes.


  27. Jeanette
    Jeanette January 10, 2010 at 5:57 pm | | Reply

    FWIW, I have a history of depression throughout my 17 years with diabetes.

    There’s plenty of blame and guilt tied to diabetes, and mental health conditions, and substance abuse..

    If Casey Johnson was depressed.. Yikes. Triple-freakin-whammy.

  28. Pam
    Pam January 13, 2010 at 8:20 pm | | Reply

    Casey Johnson’s death is a great tragedy as is any young person. The weekend after her death was announced our 12 year old son suffered DKA. It was our first experience with this in 7.5 years since diagnoses. It was the most terrifying experience even though we caught it relatively early. We were thanked by the E.R. doctors for this actually. Exactly 1 year before our son was diagnosed one of our high school friends who had T1 was found dead in his bed, at his funeral his mother said to us we always knew he would not have a long life having diabetes. When our son was diagnosed those words haunted me, until I educated myself and learned that he could have as full of a life as anyone. Diabetes is never going to stop him, but as a parent with a child diagnosed I was up front with everything that could happen to him even at the age of 5 when he was diagnosed. We might not ever know if diabetes was involved in the death of Casey Johnson, but I will admit it put me on edge and I used it as a reminder for my son the possibility of what can happen.

  29. Sarah
    Sarah January 13, 2010 at 8:47 pm | | Reply

    The idiot “nurse” (get a real education please) on here is a shining example of why most people in healthcare are not informed enough to work with Type 1 diabetics. Even those healthcare workers themselves with Type 1 diabetes have been brainwashed by perpetual “blame the diabetic” mentality. Sick. Many, many, many, infants, children, teens, and adults have died from Type 1 diabetes despite their best management and efforts. And most of these cases do not involve mismanagement, drugs, or alcohol. Although I am not surprised by those who do turn to drugs to cope with an incurable and uncontrollable disease in which you are expected to constantly be a pancreas. There is little compassion or support, just blame, as we can see here. You are a failure if you cannot be a perfect Pollyanna diabetic. You can’t expect a Type 1 diabetic who has been revived 30 times to not be affected by his condition. Many of us are unstable despite constant vigilance and management. If Type 1 diabetes was an easy disease to control, none of us would be here on this website. Anyone who disputes this is living in denial, and THEY have the real problem. People like this are a hindrance to our plight for our need for a cure and should be removed from the diabetes community.

  30. Nancy
    Nancy January 14, 2010 at 8:07 pm | | Reply

    I have had 40 years of an experience with my mother as a diabetic & am grateful that with the many reactions & hospitalizations she has had by God’s grace she is still with us.

    Though I never met Casey, through various interviews, she struck me as a very sensitive soul. No one is perfect. When bad choices result in
    devestating circumstances, I am relieved that God’s great mercy can be shown.

    As a Roman Catholic, I am taught that to pray the rosary for the deceased & to have masses held in their name helps the repose of their soul. Hence, a mass will be held in Casey’s name at St. Clare Parish in Toronto, Ontario, Canada on March 10, 2010 at 9:00 am. Perhaps those reading this post may say a prayer for Casey’s soul at that time. Thank you.

    God continue to Bless & watch over our diabetic relatives.

  31. Grand Rounds Volume 6, Number 16 : The Covert Rationing Blog

    [...] Amy Tenderich, who writes the excellent Diabetes Mine blog, speculates on the recent sudden death of Casey Johnson, the 30-year-old J&J heiress with type I diabetes. Ms. Johnson is said to have spent the last several months of her life in “suicidal drug haze,” and it would be easy to write the sad event off as being completely unrelated to diabetes. But Ms. Tenderich points out that people with type I diabetes are under great stress from a young age, and far more than most people, need to pay close attention to their health habits, and they need to do it each and every day. Furthermore, they are expected to live these medically perfect lives even through the turbulent years of young adulthood, a time when when most of us can fall off the wagon for a while and still recover and lead productive lives. The diabetics who get through this difficult period are among the strongest people DrRich knows. But Ms. Tenderich reminds us that not all get through it, and that Ms. Johnson’s diabetes may well have played a part in the sad trajectory of her short life. [...]

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