Susanne’s Caregiver Story: Why Do I Always Cry In Hospitals?

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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>>

Tech to Help You Take Care of A Senior Loved One from Anywhere

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Today’s post comes to us from Marie Villeza who developed ElderImpact.org to provide seniors and their caregivers with resources and advice. Tech to Help You Take Care of A Senior Loved One from Anywhere In the past, long-distance caretaking was at best difficult and ineffective and at worst completely impossible. These days, modern tech is making it … Read more>>

Rennie’s Story: Looking So Good, Feeling So Bad – Living with MS

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Our guest blog post today comes from Rennie R., an MS patient advocate, public speaker, and retired high school teacher, who has been living with multiple sclerosis since June 2003. She shares what it’s like to live with the invisible symptoms of MS, when you “look so good” but actually feel so bad. Visit Rennie’s … Read more>>

Caregiver Becomes Patient: Danielle’s Story

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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>>

Anne’s Story: Adapting to Life With MS

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Learning to adapt is key to managing any chronic illness. Our guest blogger, Anne P., shares the hurdles of life with multiple sclerosis in today’s post. – Anne’s Story I have multiple sclerosis and many “MSers”, myself included, get really frustrated by the fact that our disease is often invisible. Especially in the early stages of … Read more>>

Melissa’s Story: The Work That Comes With Being A Patient

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Meet today’s guest blogger, Melissa, a MedX ePatient Scholar and patient advocate living with Sjogren’s (“SHOW-grins”) Syndrome, autoimmune arthritis, and chronic pain. Melissa shares what it’s like to deal with the daily frustrations that face the chronically ill. You can find Melissa on Twitter as @710dot9, and she blog at 710dot9.tumblr.com. You can learn more about Sjogren’s Syndrome from … Read more>>

Curiosity Drives Cures: A Message For Researchers

Although I’m the Director of Patient Initiatives at HealthiVibe, I’m also a person living with multiple sclerosis. Many of you know me as a patient advocate and in staying true to how we conduct our blog — reserving it for patients and caregivers — I’m taking off my HealthiVibe hat for a moment to speak from the patient perspective.

In honor of Clinical Trials Day, I want to share a video I’ve created thanking researchers everywhere for doing what they do to bring new medicines to market. I was diagnosed with MS in 1999 and was miserable, on a therapy that wasn’t working for me, for 8 years. When I joined a clinical trial in 2007 it changed my life.

To researchers everywhere, this one’s for you! Please watch and share.

With warm regards,
Jeri Burtchell


Curiosity Drives Cures: A Message For Researchers

This video was included as part of my submission to Stanford Medicine X. I’ll be participating as a ePatient Delegate for the second year in a row, speaking on the topic of Empathy in memory of my dear friend and colleague, Jerry Matczak from Lilly, who passed away unexpectedly earlier this year. #BeLikeJerry #CTAW #ClinicalTrialsDay #WhyWeDoResearch

MedX takes place September 15 to September 17, 2017.

Linnea’s Story: Living Longer With Lung Cancer Thanks To Research

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Linnea Olson is a lung cancer patient/advocate who attributes her extended survival (diagnosed in April of 2005) to innovative medical research and clinical trials.  Extraordinarily mindful of what a gift each new day is, Linnea divides her time between her many friends, three children, art, writing, advocacy and a rather demanding little pup named Kumo. … Read more>>

Stuttering, Stress, and Chronic Illness: Ashish Shares His Psoriasis Story

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Stress has a way of making chronic illness worse, and when you toss in stuttering, the effects can feel shattering. Ashish shares his very personal story of living with psoriasis and how he’s learning to take charge of his health holistically. He blogs at http://www.psoriasisselfmanagement.com. – Ashish’s Story I first got psoriasis in Aug 2005, at … Read more>>

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

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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>>