4 Tips for Communicating With Loved Ones...It 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 Disease...It 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 Disease...Having 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
Finding Joy While Raising a Child With a Rare Disease...It's hard to remember what my life was like before having a child with a rare disease. I became the caregiver of...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...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
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...reactionscomments
No Family Is the Same: A Caregiving Parent Perspective on Divorce...As a young child, I was surrounded by the most amazing family. There were family gatherings, family vacations, and memories. And then...reactionscomments
Inclusivity and Rare Diseases: 6 Things for Friends and Family to Consider...Social situations can be very difficult to navigate with a rare disease or chronic illness. From navigating logistics to friends just not...reactions1comment
"What's Up, Doc?" What the Doctor-Patient Relationship Means to Me...Your relationship with your doctor can have a big impact on your health. Since your doctor is a key member of your...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...reactionscomments
Elle Cole...Elle Cole is a mom of twin daughters. After she and her husband learned their daughter had sickle cell disease, she wished...
Building a Rare Disease Treatment Plan Brick-by-Brick...It can take years to build an effective treatment plan to treat a rare disease like narcolepsy. I know this from my...reactionscomments
Madelung's...I am helping a friend in Gulf Breeze, Florida (next to Pensacola) who is suffering from benign symmetric lipomatosis (Madelung’s disease) He...reactions4replies
How far do you travel for medical care?...In your diagnosis or treatment journey, how far do you have to go to see doctors and specialists you feel can help...reactions5replies
Big Moves for Better Care...In 2016, I gave birth to my first child at a military hospital while my husband was Active Duty Marine Corps. I was truly...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...reactions2comments
Some of My Most Absurd Rare Disease Mishaps...Although hilarity is not often associated with a rare disease, I'm glad I can laugh off a lot of the indignities that...reactionscomments
Pacing Yourself, Pushing Yourself: Managing Energy With a Rare Disease...I am beginning this article on my commute train to work, starting another work week after a typical weekend for me of...reactionscomments
