Highlighting patients and care partners from around the world living positive lives despite the hurdles they face.
These are their stories, in their own words.
By Erin Carey I created FACES of Narcolepsy in 2017 when I joined forces with four other moms from across the U.S. to fill a need in the pediatric narcolepsy community, but FACES of Narcolepsy truly began when my sister was diagnosed with narcolepsy with cataplexy 10 years earlier. My sister’s diagnosis of this rare autoimmune … Read more>>
By Ashley Manzo In this blog post, Ashley Manzo shares her story of having an autistic child and the challenges – and gifts – of caring for her son during the COVID-19 pandemic. I never wanted to have kids. I’m sure this a strange way to start this article, but it’s true. My husband and … Read more>>
November is National Caregiver Month and today’s post comes from Susanne White, founder of Caregiver Warrior. She was blessed with the opportunity to care for her parents and ventured out on a journey that would change her life. She blogs about this journey on her website and shares her experience, strength and hope with others so that … Read more>>
Danielle, a Stanford Medicine X ePatient Delegate and fierce advocate for her daughter’s rare health condition, shares her own personal story about what it’s like when the caregiver becomes the patient. You can find Danielle on social media: Twitter: @Danielle_Edges Blog: http://lifeishardwearahelmetadventuresinlife.blogspot.com Facebook page devoted to her daughter: https://www.facebook.com/AlexandrasJourney/ — Caregiver Becomes Patient On July 5, … Read more>>
Caregiving is a very important role in healthcare, but who takes care of the caregiver? Our post today comes from Beth Martel who explores this subject. Beth is a mother of two, a medical professional and a humanitarian who blogs at HealthyRecharge.com. — Who Takes Care Of The Caregiver? The duty of a caregiver for the … Read more>>
Mark and Sarah jive their way down Route 66, chasing their bucket list after overcoming a brain hemorrhage, coma, breast cancer and chemo. Mark tells their story in this uplifting guest blog post.
Guest blogger, Jenn McNary, shares her story of hope, caregiving for her two boys with Duchenne Muscular Dystrophy. If you are just joining us, please read part 1 of her touching story here: Jenn’s Story: Facing Duchenne’s Muscular Dystrophy Head On Jenn McNary is a single mom of 4 children living in Pembroke, Mass. She currently works … Read more>>
This week in our Through the Patient Lens series we bring you Jenn’s story of how Duchenne Muscular Dystrophy has touched the lives of her family. Jenn McNary is a single mom of 4 children living in Pembroke, Mass. She currently works as the Director of Outreach and Advocacy at the Duchenne focused Jett Foundation located in Kingston, Mass. … Read more>>
In our third post in our patient vignette series Ken brings us into his role of caregiver for his wife who has been diagnosed with Crohns disease. Often we focus on trying to understand the hurdles faced by patients and overlook the fact that their caregivers face them, too. Ken illustrates how everything can fall apart … Read more>>