Over the past month there’s been some chatting — with a Professional Patient and a few virtual friends sharing how they cope with the holidays. I noticed a Facebook posting from a high school classmate…
September 15th is International Myotonic Dystrophy Awareness Day. To learn more about helping educate and advocate for Myotonic Dystrophy visit the Muscular Dystrophy Association or Myotonic Dystrophy Foundation. The purpose of International Myotonic Dystrophy Awareness…
Glenn Ribotsky, a Board member with the Western Neuropathy Association, shares his dramatic initiation as a patient into the world of peripheral neuropathy. Now, 18 years later he advocates and offers support to others experiencing…
Traditionally the month of October is the time to become aware of people with disabilities — either a visible or invisible disability — but here we’re drawing attention to all those who face physical and…
What is that growing on me — could it be skin cancer? Have you asked yourself this question? During the pandemic I ignored a couple of what I thought were pimples because I was terrified…
Two Facts & A Feeling: Telling a Patient Story
- March 31, 2021
- Tagged as: advocacy, Gender confirming surgery, healthcare, patient, storytelling, transgender
Telling a patient story can be a highly emotional task for anyone. Thankfully, there are people who can help. Emily Newberry – author, speaker, coach – at the Kaiser Permanente in Oregon, is one of…
Do you see images of yourself reflected in popular media? As a person with a chronic health condition and/or disability, is your life reflected in movies, television, print, or social media? In this themed podcast…
Are you ready for three days of workshops, adaptive activities, and discovering resources and services to enhance your quality of life? Peruse the agenda, make plans for November 20-22, and register for the free Virtual…
This is part 2 of a conversation with Dalia Kinsey, RD, LD, SNS. We talk about becoming our authentic selves, how trauma impacts our physical and emotional health, and the need for inclusivity and intersectionality…
Patient Advocates, Patient Leaders
- February 4, 2020
- Tagged as: advocacy, autoimmune condition, caregivers, chronic fatigue syndrome, chronic illness, chronic pain, collagen six intermediate congenital muscular dystrophy, fatigue, fibromyalgia, Limb Girdle, lupus, Lyme disease, muscular dystrophy, neuromuscular disease, patient advocate, patient leader, respiratory, respiratory health, ventilator
What is a Patient Advocate? A patient advocate can be an actual patient with a mental and/or physical health condition, a caregiver for someone with a health condition, or a paid professional advocating on behalf…
