Was I Just Soft? A Reflection on Getting a DiagnosisGetting diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS) in my late 20s had an impact on the way I see myself. hEDS is...reactionscomments
Fill Your Cup GiveawayThe Fill Your Cup Giveaway is now closed. Thank you for your interest! February 29th is the the rarest date of all...reactionscomments
How to Observe Rare Disease Awareness DayI admit that I cannot resist the rare disease zebra branding. It's cute; zebras are close enough to horses to make my...reactionscomments
The Overflowing Cup: Childhood Trauma and Mental HealthRecently, I tried a new form of therapy: hypnotherapy. After 5 and a half years of counseling, I decided that while it...reactions3comments
Recovering From Advocacy BurnoutAdvocacy burnout can look different for different people. Burnout can present itself in many different ways. Some possible signs of rare disease...reactions1comment
The Big Craple Incident: How My Rare Disease Canceled My Travel PlansA special trip to New York City was a little over 24 hours away. I was going to honor one of my...reactionscomments
5 Changes I Would Like to See in the U.S. Healthcare SystemAs someone who has been to many, many doctors for multiple chronic illnesses and a rare disease, there are so many things...reactions4comments
Community Views: The Most Annoying Unsolicited AdviceIf you have ever expressed your feelings or concerns to a loved one about your rare disease, they may have responded with...reactions3comments
Surprise! It's Rare Disease Day!It's that special day of the year again. You know the one. The day when all of your friends bestow many a...reactionscomments
Holidays and Rare DiseasesHolidays with a rare disease can be challenging, particularly regarding energy, diet, and disability accommodations. Balancing energy and stress levels during holiday...reactions1comment
Questions I Ask Myself on My Healing JourneyI started my medical trauma healing quest in the early 2000s, but since 2022, I have made a consistent effort. I have...reactionscomments
3 Things I Learned About Doctors After My Son's Rare DiagnosisIf you or a family member are a rare disease patient, chances are it took quite some time to receive an accurate...reactionscomments
When You’re a 'Poster Child' for Your Rare DiseaseI will never forget the day I saw what the more common characteristics of someone diagnosed with MAC lung disease were because...reactionscomments
Shifting the Focus of Goal SettingGoal setting is a topic covered A LOT, and it's pretty straightforward, right? Set a goal, break it down, and work on...reactionscomments
New Symptoms, New Fears: The Beginning of My Rare Disease Diagnosis (Part 1)In July 2015, I had my little boy. He was 8 pounds and 10 ounces of pure perfection. He was my third...reactionscomments
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
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...reactionscomments
Getting Back Into Advocacy After BurnoutReaching complete physical, mental, and emotional exhaustion is a serious threat that can occur in a variety of life situations – not...reactionscomments
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
