Episode 1 : The Beginning: Receiving a Diagnosis

For anyone with NMD, the journey begins with a diagnosis…a name for the symptoms that are manifesting. Just getting to the diagnosis can be a convoluted odyssey and take months if not years, and even with a confirmed diagnosis, the odyssey is just beginning. In this episode, we will dive into that conversation from multiple perspectives – an individual diagnosed in infancy, an individual diagnosed in early adulthood and a parent who went on the journey as an advocate for their child. We will talk about each of their stories and the path they took to get a diagnosis, how it impacted their lives, how they’ve learned to live with it, what’s been hard, what’s been easy-er, and how they have coped and made a life that works for them.

To learn more about the Muscular Dystrophy Association, the services we provide, how you can get involved, and to subscribe to Quest Magazine or to Quest Newsletter, please go to mda.org/quest/subscribe. The Newborn Screening Program truly saves lives. If you want to join our effort to ensure every newborn in the country is screened for conditions like SMA or Pompe disease, join MDA’s grassroots advocacy program. You can sign up today at mda.org/advocacy or text MDAUSA to 504-57.