Big Feelings in Familial ALS: A Community Conversation about Generational Trauma

When someone is diagnosed with ALS, it can devastate a family. Imagine multiple family members being diagnosed within your lifetime. And knowing that other living family members and future generations might be at risk. Imagine growing up with the specter of ALS chasing you. Being ever-present. Your family tree becomes suspect. Who had it? Who passed it on? Who will be next? A silent time bomb that might go off … whenever. And this all occurs whether or not you are a gene carrier, or whether you know your genetic status.

Some of these experiences fall into the category of generational trauma and ambiguous grief. And this can occur whether or not you are a gene carrier. You suffer the trauma of hearing stories of how it impacted your family members. Sometimes, just watching a loved one become sick or die of ALS is enough to cause extreme trauma and anxiety. This kind of grief has a prolonged timeline into the future. A past encounter with a dying family member can make other potential gene carriers fear for their own lives and the lives of their loved ones. 

Join I AM ALS’ Familial ALS team as they discuss the emotions and impact of growing up in the shadow of ALS.

June 15 @ 6 pm ET. This will not be recorded.