Why I Am Scared to Own a Handicap Parking Sticker...Just the other day, another woman with cystic fibrosis (CF) in my area posted a photo of a letter left on her...Reactions0reactionsComments8 comments
Pacing Yourself, Pushing Yourself: Managing Energy With a Rare Disease...Needs are things like work, appointments, and obligations. Wants are things like stopping for lunch or coffee or a quick stop at Reactions0reactionsComments0 comments
5 More Practical Tips to Thrive After a Kidney Transplant...I have always been an independent person, even as a child....Reactions0reactionsComments0 comments
Transitioning From Pediatric to Adult Care With a Rare Disease...Coordination between a young person’s pediatric and adult doctors is key to a smooth transition....Reactions0reactionsComments0 comments
Community Views: Navigating the ER as a Rare Disease Warrior...It can help if you have a list of your: “Make sure you have a short cheat sheet or 'Cliff Notes' version Reactions0reactionsComments0 comments
5 Tips for Practicing Self-Care With a Rare Disease...Here are 5 tips from me to consider when choosing a self-care activity: A long day at the beach might be...Reactions0reactionsComments0 comments
No Family Is the Same: A Caregiving Parent Perspective on Divorce...One being the breadwinner and the other being a caregiver. Being the breadwinner and a caregiver can be exhausting for both people....Reactions0reactionsComments0 comments
How Nature Therapy Helps Me Live Better With a Rare Disease...As a person living with a rare disease, narcolepsy, it isn't always easy to safely access the outdoors....Reactions0reactionsComments0 comments
When There’s a Shortage of the Medicine That Keeps You Alive...In the summer of 2021, once again, there was a shortage for a few months....Reactions0reactionsComments0 comments
Life With a Rare Disease: How the Little Things Add Up...And that's sadly not a generalization. Not. A. Single. Thing....Reactions0reactionsComments1 comments
4 Realities of Living With Advanced Symptoms of a Rare Disease...Share your story, or leave a comment below....Reactions0reactionsComments0 comments
From Heartbreak to Hope: Turning Our Rare Disease Journey Into a Mission...What initially began as heartache and frustration swiftly became a mission to make a positive impact....Reactions0reactionsComments1 comments
What It Means to Celebrate Moments as a Rare Disease Family...Every step forward, even a tiny one, moves us closer to a better place. At least until we shift backward, but that's okay, too....Reactions0reactionsComments0 comments
How to Advocate for Yourself in Social Situations With a Rare Disease...I remember my (now ex) boyfriend saying, "You're making a mountain out of a molehill," when I was diagnosed with a...Reactions0reactionsComments3 comments
Founding a Rare Disease Non-profit: The Importance of Advocate Self-care...Take a walk, take a bath, watch your favorite show or movie, call and talk to a friend or family member, or...Reactions0reactionsComments0 comments
Finding Your Way After Your Child Is Diagnosed With a Rare Disease...Receiving a diagnosis of an ultra-rare disease is life-changing. You may have to let go of the life you imagined and...Reactions0reactionsComments0 comments
'I Have What?!' What Happens When a New Diagnosis Does Not Make Sense?...a name for what I am experiencing....Reactions0reactionsComments0 comments
A Guide to Awareness Proclamations: What Are They and Why Do They Matter?...It may seem simple enough, but a lot goes into a proclamation....Reactions0reactionsComments0 comments
10 Empowering Tips to Prepare Your Child Living With a Rare Disease for College...Together, we will prioritize tasks, set achievable goals, and create a schedule that allows for a healthy work-life balance....Reactions0reactionsComments5 comments
3 Ways I Spend Quality Time With Multiple Kids as a Rare Disease Caregiver...After a good chunk of time, I decided it was time to make a change. For whatever reason, a rotation schedule Reactions0reactionsComments0 comments
