Hypertrophic Cardiomyopathy and Bulimia: An Insidious Mix
When our children are diagnosed with HCM we can sometimes forget they are also at risk for other medical issues, including mental health concerns. When the mother of a young lady lost to a deadly mix of HCM and bulimia approached the HCMA in hopes of alerting parents and health care providers about the risks of eating disorders and HCM we invited her to write about it. Take the time to read this important article and share this information with others.
On August 3, 2006, my daughter Sara was exercising on the treadmill in the basement of my home, when she collapsed and died of sudden cardiac arrest. Sara was 19 years old. She had been diagnosed with hypertrophic cardiomyopathy at age 12. She had been under the regular care of a cardiologist, and over the years had displayed neither symptoms nor risk factors for sudden death. However, Sara did have a risk factor that most likely contributed to her death. Sara had an eating disorder. In her early teens, she had restricted her food intake and lost a significant amount of weight. More disturbing, at age 16, she began to binge and purge. She struggled on and off with bulimia for the years leading up to her death. At the time of her death she had experienced a severe relapse of bulimia, purging multiple times per day.
Eating disorders are the most lethal of all mental illnesses. It is estimated that 10% of people with anorexia will die within the first 10 years of their illness. The most common causes of death for anorexics are starvation, cardiac complications, and suicide. Bulimia is also dangerous, though far less lethal in the general population. However, for HCM patients, the greatest danger of bulimia is dehydration due to frequent vomiting, and subsequent electrolyte imbalance, which can lead to life-threatening arrhythmias. This is likely what caused Sara’s death.
My understanding of eating disorders comes not only from my personal experience with my daughter, but also from my 25 years of practice as a clinical psychologist, the past 15 with a college population, in which eating disorders are ubiquitous. Although much of what I have to say applies to eating disorders in general, this brief discussion focuses mainly on bulimia, both because this was Sara’s primary problem, and because bulimia exhibits two unique features that increase its danger for patients with HCM:
1. Bulimia is relatively easy to hide. Most people with bulimia appear within a normal weight range. Bulimic behavior is associated with shame and secrecy. Many bulimics report that they have engaged in bingeing and purging for great lengths of time without anyone else knowing about it, even family members in the same home. Bulimics feel ashamed of their behavior, and tend to deny or minimize it when questioned, even by health professionals.
2. Bulimia is extremely pervasive, recurrent, and persistent. Estimates of prevalence range from 4% in the general population, to nearly 30% in the college population. Although bulimia is most commonly associated with young women, it occurs in males, and it occurs throughout the lifespan. While 50% of bulimics recover within 5 years, 30% only recover partially, and 20% do not recover.
One important implication of these statistics is that many individuals with bulimia go undetected and untreated, and even those who receive treatment at one time frequently relapse at a later date, unbeknownst to their care providers.
Although the solution to this problem is larger than the scope of this discussion, I would like to offer a few simple suggestions for families and health care providers of HCM patients.
If you suspect that a family member has an eating disorder, don’t ignore the signs. There are many excellent resources available on the internet with information, education, and advice on how to help a loved one: http://www.helpguide.org/mental/eating_disorder_treatment.htm is a good place to start. http://www.edreferral.com/ provides referral information for finding therapists and physicians who treat eating disorders.
· Be aware that there are a significant number of patients who have undiagnosed eating disorders. Given the .2% prevalence of HCM, and at least 10 million people in the US with eating disorders, there are some 220,000 individuals with co-occurring disorders. Some of these people are going to show up in your practice, and they will not tell you about their eating disorder unless you ask specifically.
· Ask questions. The following resource offers a brief screening tool for eating disorders developed for health care providers: http://www.aafp.org/afp/20030115/297.html.
· Refer. Emphasize to your patients the dangers of co-occurring HCM and eating disorders, and help them get treatment. http://www.edreferral.com/ is a national listing of providers who treat eating disorders.
· Follow up. Don’t assume that if you’ve addressed this issue once, the problem has been solved. Ask again during follow up visits. The recurrence rate for bulimia in particular is alarmingly high.
I will never know if Sara’s sudden death could have been prevented. I am sharing these thoughts with you with hope that the lessons of her death, if taken to heart by people in a position to help, might avert future tragedies of this nature.
Miv London, Ph.D. is a psychologist at the University of Vermont Counseling Center, and mother of Sara and Rose. Sara died in 2006 due to complications of HCM and bulimia. Rose, 16, also has HCM, and received an ICD in 2008. She is doing well. Miv can be reached at firstname.lastname@example.org.