If you, or someone you know, has a muscle or nerve condition such as Multiple Sclerosis, Spinal Cord Injury, Amputation, Osteoarthritis, Parkinson’s Disease, or a neuromuscular disease (i.e. myotonic dystrophy, SMA, Charcot Marie Tooth, Becker’s,…
Being diagnosed with a chronic, debilitating disease can certainly bring stress to one’s life. In fact, that stress can be significant enough to be called trauma. How one handles this stress varies. Some people have…
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…
Four women with different physical abilities talk about what fashion means to them and how they deal with fashion challenges. Cheryl and Lainie both have Charcot Marie Tooth (CMT) and wear AFO leg braces. Lainie…
If you have a physical or mental health condition that has altered the way you look or behave, it may scare people. Have you had friends or family members change how they interact with you…
Vocal problems can occur for people with all types of conditions — Parkinson’s disease, muscular dystrophy, stroke. Acute laryngitis is very common while chronic laryngitis affects over 20% of the population. Christine received a diagnosis…
‘Tis the season to be thankful, grateful, and appreciative. But how does one get to a place of gratitude if you’re feeling miserable — physically, emotionally, or both? Toni Bernhard, author of How to Be…
Maybe you have a firm grasp on what being an Advocate is all about? This episode explores different ways people with disabilities, their allies, and their caregivers practice advocacy. Whether you’re searching for the best…
Is using Social Media important to you? Which platform do you use to find support from others with the same chronic health condition? If you’re a caregiver, do you access an online group to connect…
You know when you have a progressive disease sometimes it seems like the next step — the new normal — is dramatic? It seems to come out of nowhere…whether it’s your mobility, your energy, breathing…
