End of Life Care and Wrapping Up Unfinished BusinessI now find myself in Hospice Teams diligently assessing each organ system during their weekly visits. Particularly, the scientific data remains of interest. Is there an advance of the disease?... By Ellen Reed5 min readBookmark for laterReactions0reactionsComments2 comments
Getting Comfortable Speaking About End of Life Care and DeathEditor's note: Read Ellen's first article titled "It Isn't Over Until It's Over: Deciding to Stop Chemotherapy" here. An early memory: At three years old, nine of our family members... By Ellen Reed3 min readBookmark for laterReactions0reactionsComments2 comments
Navigating Stress, Anxiety, and Depression as Patient AdvocatesAs patient advocates, we dedicate ourselves to supporting others through their healthcare journeys. However, amidst our commitment to others, it's crucial not to neglect our own mental health. Stress, anxiety... By Racquel H. Dozier3 min readBookmark for laterReactions0reactionsComments0 comments
Using Airport Assistance When TravelingWhen I was first diagnosed with psoriasis, I could never imagine the journey my condition would open for me. I thought it was a curse and nothing good could come... By Vickie Wilkerson3 min readBookmark for laterReactions0reactionsComments1 comments
U.S. Service Dog Law BasicsHave you ever considered getting a service dog to help with your medical condition? Service dogs are dogs that are trained to help their owners with their disability. Disabilities are... By Tatiana Corbitt2 min readBookmark for laterReactions0reactionsComments2 comments
Breaking Up Is Hard To Do: When It’s Time To Find a New ProviderYou can start to sense when the relationship has run its course. Maybe clinic appointments are feeling rushed. Maybe you don’t feel heard or understood. Maybe you don’t feel comfortable... By Natalie Hayden3 min readBookmark for laterReactions0reactionsComments1 comments
In America: What’s That?The In America survey is now closed. To learn more about the challenges of living with chronic, rare, and terminal health conditions, we are conducting our In America survey. By... By Editorial Team 2 min readBookmark for laterReactions0reactionsComments0 comments
Living With Chronic Illness as a Black Woman: A Personal StoryI have been living with chronic illnesses for over 20 years. I was diagnosed with lupus and rheumatoid arthritis (RA) in the prime of my life. As a black woman... By Racquel H. Dozier3 min readBookmark for laterReactions0reactionsComments6 comments
What to Know About Health Leader CompensationTime and time again, we hear the question, “How much should I charge for my patient advocacy expertise?” It’s an ongoing and worthy debate for patient advocates in the health... By Editorial Team 2 min readBookmark for laterReactions0reactionsComments11 comments
Navigating Copyright as a Patient Leader: An Interview With Gerry LanganBeing a Patient Leader in the chronic, terminal, and rare disease communities is no easy feat. You're constantly balancing managing your health and providing your community content, information, and support... By Editorial Team 3 min readBookmark for laterReactions0reactionsComments2 comments
Participatory Medicine and the Patient Leader: An Interview With Danny Sands, MDAs patients and caregivers, we often look to our doctors and other healthcare practitioners for the answers to our health problems. But what if we told you that to manage... By Editorial Team 5 min readBookmark for laterReactions0reactionsComments3 comments
Replay: The Story You Need to Tell Writing WorkshopApril Johnson Stearns, founder and editor-in-chief of WILDFIRE Magazine, led a writing workshop for Social Health Network Health Leaders interested in using their voice to advocate for themselves and others... By Editorial Team 1 min readBookmark for laterReactions0reactionsComments0 comments