OCD and Muscular Dystrophy

Obsessive-compulsive disorder (OCD) is largely characterized by obsessions and compulsions which can overtake a person’s life. While previously labeled as an anxiety disorder, it is now listed in the DSM 5 under the heading of obsessive-compulsive and related disorders.

While not technically an anxiety disorder, the majority of people with OCD deal with anxiety issues and might even be diagnosed with a specific anxiety disorder, such as Generalized Anxiety Disorder (GAD) or social anxiety disorder. Indeed, comorbid conditions with OCD are not unusual, and OCD can often be seen with depression and, to a lesser extent, with Bipolar Disorder and schizophrenia.

Now researchers have found that compared to the general population there is a higher than average prevalence of obsessive-compulsive disorder in those with Duchenne Muscular Dystrophy (DMD). DMD is a genetic illness that leads to progressive deterioration of muscle fibers. It usually only affects males but females can carry the mutated gene.

The study was published in May 2018 in the Journal of Child Neurology and was conducted by researchers from the University of Iowa. They worked on characterizing the clinical signs of OCD in those with DMD as well as its impact on patients and their families. The participants’ response to treatment was also studied.

The team reviewed the medical charts of 107 male patients aged 5-34 who had been treated at the University of Iowa Hospital and Clinics between 2012 and 2017. The study focused on a final group consisting of thirty-nine patients with DMD.  These patients, on the whole, exhibited higher levels than average of anxiety, depression and OCD, with symptoms of the disorders often overlapping. A total of fifteen subjects ranging in age from 5 – 23 exhibited signs of OCD. The mean age at onset was 12.1 years, but the study reported evidence of symptoms starting as early as age five.

The researchers said:

“Common initial symptoms included difficulty with changes in routine, repetitive behaviors, and organizational compulsions. Many patients required a very specific bedtime routine.”

“Our data affirm that internalizing disorders [OCD] are prevalent in the Duchenne muscular dystrophy population, warranting clinical attention and screening, as generally early diagnosis and treatment are associated with greater symptom improvement.”

Not surprisingly, the lives of families and patients with DMD are often negatively affected by the presence of obsessive-compulsive disorder. Distress and irritability in those suffering with both DMD and OCD significantly disturbed family routines and quality of life. Symptoms also tended to worsen as patients grew older, but treatment with selective serotonin reuptake inhibitors (SSRIs) resulted in consistent improvements over time. While medication did not completely resolve OCD symptoms, patients and their families reported they helped ease anxiety and improved their quality of life.

What I find particularly interesting about this study is that while psychotherapy (I’m hoping in the form of exposure and response prevention therapy) was recommended to all fifteen participants with OCD, only five were actually getting this treatment. In contrast fourteen of the fifteen subjects were taking SSRIs. The researchers attributed these statistics to a lack of access to qualified therapists as well as financial constraints felt by the families.

Once again, we see how difficult it can be for those with obsessive-compulsive disorder to get the proper treatment. Exposure and response prevention (ERP) therapy is the recommended, evidence-based psychological therapy for the treatment of OCD, but it is often out of reach for so many people. Those with DMD and OCD are likely to face unique challenges in terms of family accommodations and dynamics, and could benefit greatly from expert care and advice.

At the very least, this study brings OCD awareness to the forefront for those with DMD and their families. If OCD is recognized early and properly treated, its effect on lives can be minimal. And for those already living with the burden of DMD, that would surely be a good thing.