Caregiver Becomes Patient: Danielle’s Story

Danielle

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>>

Heather’s Story: Hope Is The Fuel We Run On #PURASyndrome

Heather Bowie

Heather Bowie shares the story of her son Aidan and his rare disorder known as PURA Syndrome in this week’s guest post. Read more about Aidan on his mother’s blog at Family Synapse http://familysynapse.com . For information about sponsoring or attending the PURA Syndrome Conference June 23-25, 2017 in Philadelphia,  visit the PURA Syndrome Foundation website at https://www.purasyndrome.org/conference17. Also … Read more>>

In the Fight of Their Lives: A Caregiver Perspective on Participating in a Clinical Trial

mike-and-anne-july-2015-e1436969414387

Our guest post today originally appeared on Anne Moore Sabatos’ blog. She and her husband Mike have been married barely over a year and they are in the battle of their lives.  From the “About Me” page of her blog, Anne writes “We were married in November of 2014. Unfortunately, he has cancer, and not … Read more>>

Mark and Sarah’s Story: How a Brain Hemorrhage and Breast Cancer Improved their lives

Mark and Sarah

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.

Lorraine’s Story: Caregiver to Her Husband With Type 2 Diabetes

lorraine&steve

Lorraine Cook is the wife and caregiver of Steve, who lives with type II diabetes. She shares with us the struggles of trying to reverse lifestyle habits that brought on the condition. Lorraine lives in North Florida and operates a hand-dyed apparel business at www.tiedyedhippy.com.  Lorraine’s Story My husband, Steve, and I have been together since … Read more>>

Founder of CancerHAWK Shares Her Caregiver Story

RobynStoller_CancerHAWK_family_photo

Our guest post this week comes from Robyn Stoller, CancerHawk Founder and Patient Advocate. After losing her husband to cancer, she became empowered to help others navigate the online resources available to help them fight the disease. You can find Robyn’s website at www.CancerHawk.com. She’s also @CancerHAWK on Twitter, and has a Facebook page at … Read more>>

Jenn’s Story Part 2: Caregiver Has Hope for Children with #Duchenne Muscular Dystropy

Jenn McNary

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>>

Jenn’s Story: Facing #Duchenne Muscular Dystrophy Head On

Jenn and Family

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>>

Through the #PatientLens: When The Caregiver Becomes Sick

Ken McKim and his wife

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>>