Few families affected by Duchenne muscular dystrophy (DMD) would disagree that the disease takes a heavy toll not only on patients themselves, but on all those around them as well.
Yet parents, siblings, and others often neglect their sleep, emotional well-being, and happiness in the process, warned participants in an online session organized by the nonprofit organization CureDuchenne. The panel happened to coincide with World Mental Health Day 2021, designated as such by the World Health Organization.
Tiffany Cook, MS, senior director of CureDuchenne Cares, moderated the discussion, which formed part of the charity’s 3-day Futures 2021 event.
“I tell patients and their families after a diagnosis of Duchenne that it’s not just an individual diagnosis but an entire family diagnosis,” said Taylor Berhow, LCSW, behavioral health specialist at the University of Utah. “If you have Duchenne or are affected by Duchenne, that’s no surprise to hear. But often our medical community doesn’t necessarily make that connection.”
Children with Duchenne, Berhow said, understand that their disease is a burden on their parents, “and will do whatever they need to feel accepted and loved. They may feel pressure to not be an additional burden on Mom and Dad, not coming to caregivers with their own problems, and not disclosing difficulties.”
There’s also the “sick child syndrome,” she said, in which “parents have guilt and shame in implementing boundaries. Obviously, the caregiver burden is profound—especially for moms because they’re often associated with guilt for giving the child Duchenne.”
Richard Kravitz, MD, is a professor of pediatric pulmonary and sleep medicine at Duke University in Durham, North Carolina.
“In the end, everything is about maintaining a good quality of life—not just for our boys with Duchenne, but also their parents, siblings, and the entire family network,” he said. “It’s a labor-intensive disease. There’s a lot to do to keep your child healthy. The question is: how do you do what needs to be done, but still take care of yourself?”
Dr. Kravitz stressed that “husbands and wives need time together,” and that siblings who are healthy also have needs that must be addressed.
“But you can’t do your best unless you’re well-rested, and we’re all sleep-deprived,” he said, noting that as a sleep doctor and lung specialist, he recognizes that many of the sleep issues affecting DMD patients have nothing to do with their Duchenne diagnosis, such as “kids who keep coming into the bedroom, or calling for their parents when there’s really nothing wrong.”
Dr. Kravitz advised parents of Duchenne patients to find out why their sons may not be sleeping.
“Sometimes parents are going into the room because alarms are going off, or they have to readjust BPAP machines or masks,” he said. “Have a good mask so it’s not sliding off. Is the child uncomfortable? Can something simple like getting a hospital bed with a rocking motion help your child sleep through the night? For families that have young men who are advanced in their diseases, can you arrange a home duty nurse to work the night shift?”
Lori Safford, a Duchenne advocate who has two sons—Sam, 25, and Ben, 23—with the disease, is raising her children alone since the death of her husband.
“There’s a reason airline stewardesses say, ‘put your oxygen mask on first, then take care of your children,‘ ” Safford said. “You have to give yourself margins in your life. You can’t do it all.”
Marisa Penrod, the founder of nonprofit group Team Joseph and mother of 19-year-old Joseph Penrod, who has DMD, said it’s “incredibly difficult” for some people to ask for help.
“When your child is newly diagnosed, and it’s all very new and fresh, everybody comes to your aid. At that time, you’re in the earliest throes of grief and literally trying to breathe. You don’t know what you need,” she said. “Rather than hoping and waiting for people to check in on you, we have to adapt the humbleness to say, ‘Hey, I need your help.’”
On the other hand, she added, “it all comes down to how much emphasis we place on Duchenne. Certain things are unavoidable, but it doesn’t have to become the center of everything we do.”
Quality of life panel: easing the burden. Presented at: CureDuchenne 2021 Futures National Conference: October 10, 2021; Virtual.