The emotional toll of explaining ALS and disease progression to children and youth can be overwhelming. If you or another family member has tested positive for a pathogenic variant (mutation) in a gene related to ALS, the potential genetic implication for your family can make talking about the disease even more difficult. Even though the majority of ALS cases will only manifest in adulthood, consider explaining what your genetic test results might mean to your children and youth early.
We know that these can be delicate, challenging, and emotional conversations. This is why ALS Canada, in collaboration with Global Neuro YCare, created a resource to support families affected by a genetic form of ALS.
This resource provides information on why it is important to initiate these conversations, how to navigate the conversations, and suggestions for when a good time may be to discuss with children and youth — encouraging open communication in families.