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The Casey Johnson Tragedy – Growing up Type 1

Posted Jan 06 2010 12:00am
There will be a lot of speculation about Casey Johnson and her death, regardless of what the Los Angeles coroner discovers. Celebrity media outlets will focus on the most tawdry or histrionic aspects of her life, with National news coverage following swiftly behind on details of the funeral and what another celebrity loss represents for us in the 21st century. No one will ever know what happened to Casey Johnson in the last minutes of her life and it isn’t that important.

What may be one important factor related to the Casey Johnson tragedy is what it represents to the diabetes community. Most every parent and every child living with Type 1 diabetes struggles with the following questions –

Can (I, he, she) live a full happy life with diabetes?

Can (I, he, she) manage this?

Too Young to Die

What has the public learned so far about this tragedy? Casey Johnson was diagnosed with Type 1 diabetes when she was eight years old and in a family press release we learned that “Casey struggled throughout her life fighting [diabetes].” She was an it girl, and moved from Manhattan’s Upper East side to Los Angeles in search of fame a number of years ago. She had a history of drug abuse, troubled relationships and most recently was arrested for theft. Her family tried to get her into rehab, and when all else failed, they cut her off financially. Her father, Robert Wood Johnson, scion to Johnson & Johnson and owner of the New York Jets, is Chairman of the Juvenile Diabetes Research Foundation (JDRF). The Juvenile Diabetes Research Foundation, an advocacy and fundraising organisation focused solely on Type 1 diabetes (the more scientific term for juvenile diabetes), was founded forty years ago by parents of diabetic children, and has since raised over 1.3 billion dollars for research. We can only assume that Robert Wood Johnson got involved with JDRF at such a high level because of his daughter. We don’t know much about Casey and diabetes except that she and her father wrote and published a book together about managing diabetes (Managing Your Child’s Diabetes”) in 1994. She would have been about 15 years old at that time.

Roll the tape forward to January 4, 2010. Casey Johnson is found dead in a rented house, empty, without heat and full of rats, in Los Angeles, but cause of death is not known. She is 30 years old.

Depression and Mortality in Type 1 Diabetes

It is a well known fact that depression plays a significant role in Type 1 diabetes, and so many thousands of studies have been made to demonstrate how diabetes has a negative impact on the mental health of the patient, that it has become indisputably a given:

people with diabetes have a greater risk of depression than people without diabetes…Just like denial, depression can get you into a vicious cycle. It can block good diabetes self-care. If you are depressed and have no energy, chances are you will find such tasks as regular blood sugar testing too much. If you feel so anxious that you can't think straight, it will be hard to keep up with a good diet. You may not feel like eating at all.

And so on and so on.

Let’s take one step further and look at mortality in young type 1 diabetic patients from two studies, the first completed in 2008.
In developed countries (developed health care systems which provide adequate coverage), the researchers found a significant rate of “excess” mortality in this group, which really means they found nearly 5 x’s as many deaths in this (young Type 1) age group then in non-diabetic <30 year olds. They also found a large proportion of unexplained deaths in bed. In their summary, they found nearly half of all deaths were due to acute (coma) or chronic (heart) complications of diabetes. Drug misuse was also found to be a trend in this particular population (teens, young adults).

Do adolescents with Type 1 diabetes experiment with drugs? It is thought that around ninety percent
of all teenagers have experimented with alcohol or drugs. Why would a child with diabetes be any different? Many health care professionals and even progressive government funded programmes have published information related to adolescent experimentation and diabetes and how to best manage insulin regimens with alcohol or drugs. There are other non- diabetic factors too. The younger you start, the more problems may be indicated later. Teenagers who begin substance abuse at around the age of 14 have a greater chance of developing a serious dependency problem in adulthood
than those who start later in life, say at 17-18 years. Privilege and access plays a supportive role in substance abuse. So do other obvious risk factors (domestic violence, peer pressure, trauma).

Without any details or informed speculation, it would be hard to know how or when any of these issues (depression, drug abuse, alcohol abuse) began in the life of Casey Johnson. All we know is that it started at some point and ended in early death.

Type 1 Diabetes and Adolescence

There is considerable evidence that adolescence with Type 1 diabetes is associated with poorer compliance than childhood with the average age of serious noncompliance beginning around the age of 14-15 years of age. Not surprisingly, factors related to this would seem to run parallel to teenage rebellion and a teenager's need to assert independence. Sarah Caltieri, a young woman who was diagnosd with Type 1 as a child, feels certain she paid a high price for her teenage rebellion which cost her sight. When she hit pubery, she started avoiding her regimented lifestyle and her diabetes, by bingeing, missing meals and injections. She is now legally blind.


There have been many clinical studies and papers published on this subject matter. One study pointed out that adolescents might use diabetes as a vehicle to rebel against people such as parents and doctors who could be perceived as controlling and interfering. Therefore, as notions of identity are carried forward into adulthood, unresolved conflicts impede the process of developing identities separate from chronic illness. Some may even feel that their ONLY identity is diabetes. There is a need for the self to be recognized, separate from diabetes. You can see a similar rebellion in adolescent over acheivers who feeling too much pressure wish to be separated from their status, the star athlete, the child celebrity, the prodigy. (Fosbury, J. (1996). Psychological treatment (CAT) with poorly-controlled diabetic patients.
Practical Diabetes International, 13, 158-162.)

Parenting and Diabetes

Two prominent psychologists identified four core parenting styles proposing that
parenting is either child-centered or parent-centered and that parents either place a great deal of demand or little demand on their children. From these two dichotomies emerge four parenting styles: Authoritarian (parent-centered/high demand), Authoritative (child-centered/high demand), Permissive (child-centered/low demand), and Rejecting (parent-centered/low demand).

Parent centered and or low demand parenting styles tend to result in worst case scenarios, especially when a parent tries to punish for non-adherence or any issues related to diabetes beacause a diabetic child, young person (and even an adult) already feel punished for having diabetes! Attempts to utilize this strategy will result in anger, resentment, rebellion and detachment.

Key issues for parents of children with diabetes include:

1. avoidance of punishment when dealing with diabetes issues
2. arrangement of nontraditional households to better facilitate diabetes management
3. awareness of the potential negative effects of parental overinvestment in helping children with diabetes
4. and the appropriate transference of diabetes management from parents to older children.

Many studies have demonstrated that the most positive parenting behavior correlates with the child-centered, high-demand parents (i.e., authoritative parenting). How does this relate to Casey Johnson? Maybe it doesn't at all. The most positive parenting behavior model for diabetes also correlates with the most positive long-lasting compliance in diabetes self-care, and the most significant promise for a healthy start in life.
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