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

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>>

Sarah’s Stanford MedX Ignite! Talk On Acknowledging Needs Of Your Caregiver

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Stanford is home to Medicine X (MedX), where the philosophy is that everyone–including patients, caregivers and family members–are equal stakeholders in medicine with their own expertise and valuable stories to share. By creating a culture in which everyone’s voice is trusted and respected, real change can take place in healthcare and medicine. MedX ePatient Ignite! … Read more>>

Who Takes Care Of The Caregiver?

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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>>

Angela’s Story: Inside the Mind of Someone With Chronic Illness

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Living with chronic illness can be fraught with hurdles, but when that journey begins at at a very young age, the challenges seem insurmountable. Our guest post comes from Angela, who lives with dysautonomia,  a medical term that describes a group of complex conditions caused by a malfunction of the autonomic nervous system (ANS). The ANS regulates all of … Read more>>

Leslie’s Story: Living with RA and Lupus

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Our story this week comes from guest blogger, Leslie Rott, who is 31 years old.  She was diagnosed with lupus and rheumatoid arthritis (RA) in 2008 at the age of 22.  She holds a PhD in sociology from the University of Michigan and a master’s degree in health advocacy from Sarah Lawrence College.  She is … Read more>>