Finding Your Light: Fighting Depression in Duchenne

PPMD's Kathi Kinnett, MSN, CNP worked with Molly Colvin, PhD, Neuropsychologist at Massachusetts General Hospital and Ginny Ward, an amazing mom living in Colorado with her children, including John, a young man living with Duchenne, to develop this important material. 

Life is hard, and parts of life are really, really tough. I can’t imagine that one person reading this blog has not had episodes of sadness and despair. Thankfully, these feelings usually pass, especially with the love and support of people in our lives who are able to recognize the signs and help us to come back into the light. 


During the dark periods, some may have thought about finding relief by ending their life. Throughout history, suicide has been romanticized. Romeo and Juliet, Cleopatra and Mark Anthony, and now “13 Reasons Why” (well, maybe 13 Reason Why doesn’t exactly romanticize suicide, but it does make it seem pretty easy and a way to get back at people). “How To” videos make it look easy and peaceful. But we know that suicide, and depression, are not romantic.  They are desperately painful states of helplessness and hopelessness. For parents, the thought that their child, their heart, would consider ending their life is terrifying.


Recently, there has been an increase in posts from adolescents and young adults with Duchenne who have contemplated that the world, and their families’ lives might be easier lives if they were gone. And we know suicide can be ‘contagious.’ 


For this reason, we want to remind everyone of the signs that there is a problem, when to get help, how to get help, and how to recognize an emergency. I have asked Molly Colvin, PhD, a neuropsychologist at Massachusetts General Hospital to help. 


Children and teens with Duchenne, as well as their families, draw upon tremendous strength to cope with this life limiting diagnosis. It is normal to occasionally feel that it is too much to manage. It’s also important to recognize when worries or feelings of sadness are having a real impact on one’s ability to live life to the fullest.


At those times, it’s important to know that help is out there.


Knowing the Signs

It is very important that centers/clinics caring for families living with Duchenne ask questions around depression and suicidality. Too often, these issues are forgotten in the myriad of medical testing. There are many in the community who are dealing with these, and other psychosocial issues. Make sure that your neuromuscular team has someone who is asking questions of parents and their families around these issues at every age, and at every visit.


Normal Worries and Sadness

There is, of course, normal anxiety and sadness that happens in all in children and teens, including those with Duchenne are no exception. Some examples of normal episodes might include:

  • Expressing concerns or worries about the future
  • Worrying or difficulty relaxing immediately following a change in routine, including changes in school or living environment
  • Brief episodes of tearfulness or irritability in response to a stressful event
  • Needing more time to fall asleep or more reassurance from a parent immediately after experiencing a stressor or change in routine
  • Nervousness in the face of an anticipated event (good or bad)
  • Sadness following the loss of a pet or family member

Warning Signs that Help is Warranted

Parents and teens/young adults should pay attention to recognize the need for help. When anxiety or sadness might feel too overwhelming, warning signs might include:

  • Worries or sadness are becoming worse, and not better over time
  • Expressing hopelessness about the future
  • Refusing to participate in school or activities, particularly when those were once enjoyed
  • Outbursts are intensifying in frequency or intensity and are disrupting family functioning
  • Self-confidence is reduced or there is frequent self-criticism, especially with black-or-white language (e.g., “never”, “always”)
  • Your child or teen needs excessive assurance that everything is OK
  • The symptoms interfere with normal activities (e.g., homework, chores)
  • Alcohol or illegal substance use
  • There are unexplained headaches, stomachaches, or other illnesses that interfere with normal activities (e.g., going to school)
  • There has been a significant change in sleep patterns, appetite, or energy that cannot be accounted for by other medical factors
  • Changes in your child’s behavior have the family “walking on eggshells”
  • Your child or teen has a hard time seeing “the bright side” any more

When to Seek Immediate Help

If your child exhibits any of the following warning signs, get help immediately. If you are questioning the need to get help, it is always better to be safe than sorry.

  • Gathering information or means to harm oneself or another individual
  • Verbalizing threats to harm oneself or another individual
  • Acting in a manner that conveys intent to harm oneself or another individual, including taking unnecessary risks
  • Talking about death as if it is imminent when there is no physical reason to suspect that it might be
  • Giving away prized possessions or making arrangements for things to happen in their absence

How to Get Help

There are emergency mental health systems in place nationally, regionally, and locally. If you need help urgently, then we hope the resources below will be helpful. Social workers in your area should also be able to direct you to available resources for less urgent situations.

  • If there are urgent safety concerns (e.g., verbalizing or acting in a manner that conveys intent to harm), then you should call 911 and/or immediately go to the nearest emergency room.
  • Seek help from a psychologist and/or psychiatrist. Start with the point person for your child’s medical team or your child’s pediatrician. Ideally, they will be able to help you find a provider who has experience working with children and families who are impacted by chronic medical illness.


While depression and anxiety are not pleasant topics, the first step to healing is to recognize and seek help when it is needed. There should be no shame or embarrassment in seeking help for you or your loved one as you navigate this challenging Duchenne journey.


We hope that this post will give parents and children/teens/young adults some information and resources that are helpful. 


Please remember – Every life is precious.


National Resources and Hotlines



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