Walking a Fine Line as a Squeaky Wheel: Communicating With DoctorsI once told someone about their healthcare, "You have to be the squeaky wheel." Later, a provider corrected me with the disclaimer that being a squeaky wheel can cause doctors...
Understanding Duchenne Muscular DystrophyDuchenne muscular dystrophy (DMD) is a rare genetic disorder that causes muscle weakness and degeneration that gets worse over time. It is the most common and, unfortunately, one of the...
Treatments for Duchenne Muscular DystrophyDuchenne muscular dystrophy (DMD) is a genetic disorder in which the muscles in the body weaken and break down over time. This is due to a mutation, or change, in...
Building a Caregiving Team: Finding In-Home HelpLife with a rare disease can require extra at-home help and support. This care varies by person and ranges from skilled hands-on work to running simple errands. Handling all of...
Building Your Child's DMD Care TeamCaring for a child with Duchenne muscular dystrophy (DMD), a condition that makes muscles weaker over time, will likely involve a team of different doctors and therapists. This is called...
Cost of Living With a Rare DiseaseRare diseases are expensive. Anyone "living rare" likely knows that firsthand. Without a correct diagnosis, you may receive inappropriate care. Or you might miss a chance to prevent disease progression...
Practical Tips for Managing Day-to-Day Life With DMDLiving with Duchenne muscular dystrophy (DMD) can bring many challenges each day. As a caregiver, you play a very important role in helping your child live as fully and comfortably...
4 Realities of Living With Advanced Symptoms of a Rare DiseaseAs someone living with advanced lung disease due to a rare disease called cystic fibrosis, I am all too familiar with the symptoms and burdens that this challenge brings to...
From One Caregiver to Another: What I Learned After My Child's Diagnosis"You are not alone." These are the 4 most common words I choose to tell another caregiver. I know how heavy it feels to receive the news of a child's...
The Importance of Connecting With Mentors as a CaregiverCaregivers of individuals living with rare diseases often find themselves navigating uncharted territory. The complicated medical needs, limited treatment options, and lack of awareness about the condition can make the...
