Groin Older: Aging With HemophiliaAs a child born in the mid-70s with hemophilia, I was part of a unique generation. Access to new treatments made a...reactions4comments
Reflecting on the People We Would Never Meet OtherwiseIt's a beautiful thing to meet someone who makes you forget your troubles. - author unknown I have always strived to see...reactionscomments
Personal Grooming With a Rare DiseaseLiving with a rare chronic disease isn't for the faint of heart. I live with type 1 narcolepsy, and the long list...reactionscomments
How Do I Find a Specialist for My Rare Disease?When you are diagnosed with a rare disease, you will likely have many questions and concerns. Finding a specialist who can guide...reactionscomments
Participating in a Focus Group as a Rare Disease PatientRecently, the Cystic Fibrosis (CF) Foundation invited me to participate in a focus group with other late-diagnosed CFers. It was a fascinating...reactionscomments
My Rare Disease Holiday Survival GuideLiving with a rare disease like narcolepsy means that I have to live my life around my symptoms. Unfortunately, we don't get...reactions3comments
Creating Business Cards for Rare Disease AdvocacyThink back to any time you shared about your rare disease with someone. Perhaps it was with a stranger, and it was just in passing. Perhaps it was...reactionscomments
Into the Unknown With My Rare DiseaseI had a dream (or was it a nightmare?) last night about my disease symptoms increasing rapidly. I woke up blurry-eyed, slightly...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
Reflecting on My 20th Anniversary With My Rare DiseaseMy life was upended because of a viral infection 20 years ago. In the fall of 2003, I was working in a...reactionscomments
Lessons Learned in Navigating Medical DebtWith any medical event, but especially when it's a chronic illness or rare disease, medical debt can easily build up. Depending on...reactions6comments
How Nature Therapy Helps Me Live Better With a Rare DiseaseAccess to lush, green natural spaces feels like a privilege to me. As a person living with a rare disease, narcolepsy, it...reactionscomments
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
Being the Change: How My Advocacy StartedI remember the day the genetic counselor called me with my son's diagnosis. She gave me information about a paper published on...reactionscomments
4 Tips for Communicating With Loved OnesIt can be so hard for people outside of the rare disease community to truly understand what we go through – ongoing...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
Community Views: The Biggest Misconception About My Rare DiseaseHaving a rare disease poses problems many people can not imagine. It can be discouraging to share your experiences when others do...reactionscomments
A Guide to Awareness Proclamations: What Are They and Why Do They Matter?Let’s talk about awareness proclamations. It’s likely fair to say that most of us have seen an awareness proclamation announcement by a...reactionscomments
Are Forums Still Relevant in the Social Media Age?One of the most exciting parts of the advent of the internet was the ability to quickly communicate with others from around...reactionscomments
Rare Disease and Food Insecurity Have you ever been so affected by your rare disease that you weren't able to go grocery shopping, leaving your pantry empty...reactionscomments
