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 where one lives, the cost of medical testing...reactions1comment
Caring for Hudson: Q&A With a Parent Managing Hypotonic Cerebral PalsyThe best thing that has come out of being part of the rare disease community is the passionate, loving, and optimistic people I have met. The ones that, even on...reactionscomments
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 isn't always easy to safely access the outdoors...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 make my friends laugh. For instance, I recently...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 PubMed, and said that another family had set...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 symptoms, fatigue, never-ending appointments with specialists, continuously adjusting...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 tumor. He was only 22 years old. It...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 not know your story. But it is valuable...reactionscomments
A Guide to Awareness Proclamations: What Are They and Why Do They Matter?Let’s talk awareness proclamations. It’s likely fair to say that most of us have seen an awareness proclamation announcement by a city, state, or even country for something. Awareness proclamations...reactionscomments
Finding Joy in the Rare LifeIt is hard to remember what my life was like before having a child with a rare disease. I became the caregiver of my firstborn son when I was still...reactions2comments
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 the world. The first message boards, also known...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 for days or weeks at a time with...reactionscomments
Inspirational, Courageous Me?!Someone told me today that I was an inspiration. It's not the first time. In 2010, when I had the immense luck to be selected to go and work with...reactionscomments
No Family Is the Same: A Caregiving Parent Perspective on DivorceAs a young child, I was surrounded by the most amazing family. There were family gatherings, family vacations, and memories. And then, one day, nothing was the same. I found...reactionscomments
Inclusivity and Rare Diseases: 6 Things for Friends and Family to ConsiderSocial situations can be very difficult to navigate with a rare disease or chronic illness. From navigating logistics to friends just not quite getting it, it can certainly feel exhausting...reactionscomments
"What's Up, Doc?" What the Doctor-Patient Relationship Means to MeYour relationship with your doctor can have a big impact on your health. Since your doctor is a key member of your healthcare team, they should be someone you are...reactionscomments
I’ve Learned Self-care. What About Self-love?When we experience chronic illness, particularly a rare disease, I believe it's common for us to have trouble not just providing ourselves with self-care but also self-love. We can easily...reactionscomments
Building a Rare Disease Treatment Plan Brick-by-BrickIt can take years to build an effective treatment plan to treat a rare disease like narcolepsy. I know this from my own personal experiences of living with narcolepsy, as...reactionscomments
Big Moves for Better CareIn 2016, I gave birth to my first child at a military hospital while my husband was Active Duty Marine Corps. I was truly amazed that I gave birth to such a...reactions3comments
When a Rare Disease Diagnosis Brings Clarity (And New Concerns)At age 65, I was diagnosed with cystic fibrosis (CF) by National Jewish Health (NJH) in Denver 6 months after I took myself there for a MAC lung disease evaluation...reactions2comments
