The siblings of individuals with Duchenne are often called “the unaffected ones” by the medical community.
If only that were true.
“A diagnosis does not happen to just one person. It happens to the entire family.”
– Emily Holl, Director of the Sibling Support Project
Between the terminal diagnosis, extensive responsibilities, challenges of social support, lack of sleep, changing relationship dynamics, medical emergencies and behavioral challenges, the chronic stressors are very real and quite overwhelming as a sibling of a child with Duchenne Muscular Dystrophy.
One of the hardest things about being a sibling of an individual with Duchenne is when no one talks about Duchenne. Siblings are relatively isolated in their access to information. Many parents avoid the topic, not knowing what to say or thinking they are “sparing” the other children from grief and pain.
Siblings are also separated from their family more often than their siblings with Duchenne. The sibling is often excluded from the annual or bi-annual clinical appointments and also excluded from the travel for clinical trials. Not only is the separation from family confusing enough for the child, but their absence from appointments again excludes them from an opportunity to gain information about the situation.
Sisters can easily be carriers – and even manifesting carriers – of Duchenne Muscular Dystrophy. Unfortunately, not every family has the luxury of determining the carrier status of the daughters, and there are many families who simply choose to not know. In the end, even if a sibling’s genes don’t carry evidence of the disease, the experience alone of being a sibling shows that they are still clearly affected by Duchenne.
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