3 Things I Learned About Doctors After My Son's Rare Diagnosis...If 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 Disease...I 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 Setting...Goal setting is a topic covered A LOT, and it's pretty straightforward, right? Set a goal, break it down, and work on...reactionscomments
28 Years...It's been 28 years since I've been going to doctors for help. 28 years since I got congestive heart failure at 32...reactions10comments
A Rare CHANCE Life...My story is about my son Chancely, who is a very strong & vibrant young boy! I started noticing he was sick...reactions3comments
Self-Care Is The Best Care...Simply put self-care means taking time to do things that will protect your well-being and happiness. It’s those things that will pour...reactions1comment
My Wild Ride...I was diagnosed with myathenias gravis in September of 2022. I presented with shortness of breath while doing water aerobics. Sounds crazy...reactions4comments
Advocacy Anywhere: Communication With Your Doctor...Through my many healthcare experiences due to having cystic fibrosis, I have experienced the power that lies in self-advocating for my health in...reactionscomments
Gina Miller...Gina is an advocate for late-diagnosed cystic fibrosis (CF) patients, and CF related-disorders, plus various other disorders she has been navigating along...
Alex Gaudlap...Alex Gaudlap is based in New Jersey, right outside of Philadelphia. Alex is one of the many people that did not plan...
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 Divorce...As 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 Burnout...Reaching complete physical, mental, and emotional exhaustion is a serious threat that can occur in a variety of life situations – not...reactionscomments
Parenting and Rare Disease: 5 Bonding Activities to Try With Your Child...If you are caring for a medically complex child, it can be difficult to find ways to bond, interact, and keep them...reactionscomments
Parenting and Rare Disease: A Journey Through Grief and Acceptance...The day my amazing little boy was born, I knew he was different. I was 22 years old and forced to grow...reactionscomments
Reflecting on the People We Would Never Meet Otherwise...It'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 Disease...Living with a rare chronic disease isn't for the faint of heart. I live with type 1 narcolepsy, and the long list...reactionscomments
Caring for Someone With a Rare Disease...Caregiving for a loved one with a rare disease is both rewarding and challenging. Much time, energy, and resources can go into...
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
