Dr. William Lowery, a practicing pulmonologist at Alameda Hospital in Northern California, was diagnosed with Limb-Girdle muscular dystrophy some 20 years ago. He’s now founded a non-profit organization to help others shorten their diagnostic odyssey…
Featured are four people — with their own unique health conditions — that are coping and making the best of the quarantine and pandemic. Luda Gogolushko, who has SMA Type 3 and lives in Southern…
People with anxiety, autism, blindness or low vision, deaf and hard of hearing, mobility challenges, chemical sensitivities, or PTSD may face unique challenges visiting a dental office. Now with the additional barrier — the COVID-19…
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…