Xanadu I or Don't I? A Rare Disease Roller Skating OdysseyIn the earliest days of the COVID-19 pandemic, my partner Gwenn and her friends decided to order roller skates and take a...reactions1comment
How I Get Through Tough DaysHumor plays a huge role in my life. I'm pretty open about having hemophilia A, and I rarely miss an opportunity to...reactionscomments
Parental Partnership: Supporting Families With a Child Affected by a Rare DiseaseWhen I became a mother at 26 years old and my husband a father at 27 years old, we learned that the...reactionscomments
10 Things I Wish People Understood About Rare DiseasesBeing a caregiver to someone with a rare disease can be a complex journey. It not only alters the life of the...reactionscomments
Embracing Diverse Coping Mechanisms as Parent CaregiversAs a parent caregiver raising a child with a rare disease, my journey has been filled with different challenges, victories, and profound...reactionscomments
Keeping Your Family Connected When Raising a Child With a Rare DiseaseRaising a child with a rare disease extends beyond medical hurdles – it encompasses emotional and familial challenges. The impact ripples through...reactionscomments
5 More Practical Tips to Thrive After a Kidney TransplantIn part one, 5 Practical Tips to Thrive After a Kidney Transplant, I discussed the pertinent things that you need to keep...reactionscomments
Living for the Moment: Doing the Unexpected With Pompe DiseaseIt was 2018, and I turned 50 years old in March. The following month, we lost our oldest son to a brain...reactionscomments
Pompe Disease and GeneticsPompe disease is a genetic condition. People with Pompe disease have changes in specific genes that impact how they break down sugar...reactionscomments
Nutrition and Exercise With Pompe DiseaseRight now, there is no cure for Pompe disease. The main treatment is enzyme replacement therapy (ERT). ERT drugs help replace the...reactionscomments
Pompe Disease: What You Need to KnowPompe disease is a rare genetic condition that affects the muscles that connect to your bones and heart. It is also called...reactionscomments
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...reactionscomments
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...reactionscomments
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...reactionscomments
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...reactionscomments
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...reactionscomments
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...reactions5comments
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...reactionscomments
Managing Stress and Chronic IllnessStress is one of those factors that can really impact our overall health. Stress can affect the body in many ways, with...reactionscomments
Why I Made My Home Wheelchair Accessible Sooner, Not Later"Why do you think you would need wheelchair-accessible doors in your home?" I answered simply that I was previously required to obtain...reactions3comments
