Mito Community Voices: Advice for Families Affected by Mitochondrial Diseases

Category: Advocacy, Caregiver Stories, Patient Stories
By: admin Date: October 30, 2019

Welcome back to our video series, “Mito Community Voices.” The Charge sat down with patients, caregivers and advocates for their first-hand experience of what life with mitochondrial disease is like. In this video, these mito warriors share advice for newly diagnosed patients and families.

A mitochondrial disease diagnosis may make you feel alone and overwhelmed. You may be unsure about your next steps or have trouble coping with the plethora of new information.

You’re not alone – although every diagnostic journey is different, other patients have gone through similar experiences. There are resources, advocacy groups and a community to get involved with and support you. Blaine Penny, Lindsey Zbydnowski, Kristy Garrigus, Shelley Bowen, Heather Schichtel and John Knox and his family share their advice.

Advocacy Groups

You may feel all alone, but many others have confronted some of the same challenges you face. Organizations like MitoAction, United Mitochondrial Disease Foundation (UMDF) and the Foundation for Mitochondrial Medicine (FMM) offer information, advice and referrals, facilitate access to clinical trials and provide a community for patients and their families.

Learn About Advocacy Groups