A diagnosis of Duchenne muscular dystrophy (DMD) has consequences for the whole family — siblings too. Siblings of children with DMD face complex emotional challenges, from feelings of guilt to responsibility and worry. It is important to give these siblings the right support, help them manage the burden and avoid negative long-term psychological consequences.
The impact of having a sibling with DMD
Part of being the sibling of a child with a life-altering disease is learning that the priority is often on the health and well-being of the affected child. The “glass child” or “well-sibling” syndrome refers to children who feel invisible or overlooked as the family most often focuses on the child with a disability or illness. This can cause the sibling of a child with DMD to have mixed feelings of guilt for being lucky to be healthy, some bitterness that the rules are not the same, jealousy for the attention the sick child receives and a sense of responsibility for their brother’s well-being.
However, there are sometimes positive impacts, such as enhancing family cohesion and improving maturity by learning coping mechanisms to manage DMD. There is also a special relationship that exists between the siblings that can be strengthened by the experience.
Learn more about DMD treatment and care
Ways to support Duchenne siblings
Siblings of chronically ill children require a voice so that they may express their experience without fear of judgment. A coordinated approach to supporting siblings should include parents, wider family, school staff and healthcare professionals.
Communicating around a DMD diagnosis: Explaining a DMD diagnosis to younger or older siblings requires separate approaches. Educational materials and open communication, with plenty of time for questions and their individual emotional response are essential. The progression of DMD and how it will affect their brother needs to be explored over time. Understanding the disease will help siblings accept the reality of DMD.
Providing emotional support: As well as family support, professional help and support groups for siblings of children with disabilities are recommended to help process the ongoing emotional response.
Create space for one-on-one time with the “well sibling”: As a parent, spending regular quality time with your unaffected child is an important part of showing them how they are equally valued within the family.
Balancing their level of responsibility: Siblings can quickly become too involved in caregiving duties. This can become a burden and replace time spent with friends or on other activities. It’s essential to help siblings find a balance between living their own lives and supporting their brother.
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