Family life with Duchenne is complicated. So complicated.
When there are multiple people struggling as much as the individuals in a family with Duchenne, there’s bound to be some struggles and conflict within the family itself. Just some of these common struggles include change within the family, grief within the family and growth.
Just as individuals within the family need connection and belonging, the family unit itself needs to feel connected and belonging to a greater community. Unfortunately, with the stigma and stereotypes associated with being disabled – and with Duchenne being a rare disease – many extended family and friends simply won’t be familiar with the lifestyle so many families in our community choose.
Unfortunately, this can cause a large rift between within relationships simply because of the unknown. The good news is that it can be overcome.
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