Job-Seeking as a Caregiver for a Child With a Rare DiseaseFinding a job with a supportive and understanding employer can be an ongoing challenge for those of us raising a child with...reactionscomments
3 Ways You Can Help a Rare Disease CaregiverI am not going to lie and say that being a rare disease parent is easy. It is often a challenge for...reactionscomments
Why Caregivers Feel IsolatedBeing a rare caregiver comes with many challenges that the community as a whole can't relate to. Though every rare family is...reactionscomments
Rare Diseases and Preparing for an EmergencyMedical emergencies are certainly no fun, especially when a rare disease is in the mix. However, being prepared for a potential emergency...reactions2comments
The Power of a Name: Why a Rare Disease Diagnosis MattersRecently, a friend of mine, Fiona, visited her cardiologist. She has been having some troubling symptoms that have been going on for...reactionscomments
What If I Hadn't Been Born With a Rare Disease?There's a Marvel Comics series called "What If...?" It offers mind-bending scenarios about what could have happened if one little thing was...reactionscomments
Navigating Life with a Rare Disease: An Accessibility StoryThe most consistently bothersome aspect of living with hemophilia is my left ankle. Due to both minor and, on rare occasions, major...reactions3comments
Rare Diseases, Disability, and Self-Identity: I Am More Than My ConditionI didn't always see myself as someone living with a rare disease. For years, I fought to hold onto the life I...reactions6comments
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
