Job-Seeking as a Caregiver for a Child With a Rare Disease...Finding 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 Caregiver...I 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 Isolated...Being a rare caregiver comes with many challenges that the community as a whole can't relate to. Though every rare family is...reactionscomments
The Fight for Empathy: Living with Klippel-Feil Syndrome...I was born with Klippel-Feil Syndrome (KFS), which means I have a cervical fusion and other often related issues. My fusions are...reactions1comment
Rare Diseases and Preparing for an Emergency...Medical 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 Matters...Recently, 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 Story...The 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 Condition...I 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 Odyssey...In 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 Days...Humor 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 Disease...When 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 Diseases...Being 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 Caregivers...As 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 Disease...Raising 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 Transplant...In 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 Disease...It 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 Genetics...Pompe disease is a genetic condition. People with Pompe disease have changes in specific genes that impact how they break down sugar...reactionscomments
