Changing Scarcity Mindset to a Growth Mindset With Rare DiseaseI have been learning more about scarcity mindset, and it got me thinking about how common and easy it is to fall...reactions2comments
From Heartbreak to Hope: Turning Our Rare Disease Journey Into a MissionOur rare disease journey began with concerns that the pediatrician dismissed as normal quirks. My child was slow to reach milestones, but...reactions1comment
Sponsored: Share Your Story and Help Raise Awareness for MMNBy argenx Living with multifocal motor neuropathy (MMN) can be a challenge. Everyone’s MMN journey is different—from diagnosis to symptoms to finding...
How to Be a Good Friend to Someone Living With a Rare DiseaseWhen I think about the characteristics I need in a friend due to my rare diseases, I mostly need someone who is...reactions4comments
Tips for Reducing Medical Appointment BurnoutWith a rare disease, it seems it doesn't take much for us to enter the world of becoming a complex rare disease...reactionscomments
How to Advocate for Yourself in Social Situations With a Rare DiseaseLearning how to advocate for yourself can be challenging. It's certainly a learning process, and it is often difficult to stick up...reactions3comments
How to Deal With Letdowns in Your Awareness EffortsAs I shared in a previous article, rare disease advocacy can include writing and requesting proclamations. Proclamations can be made by organizations...reactionscomments
Job-Seeking as a Caregiver for a Child With a Rare DiseaseFinding a job with a supportive and understanding employer can be an ongoing challenge for those of us raising a child with...reactionscomments
When Living With a Rare Disease Negatively Affects Sex LifeSigh… I hesitated writing about this topic out of the initial shame I felt in even having gone through any of what...reactions5comments
The Power of Friendship in the Rare Disease Community: 3 Reasons to ConnectLiving with a rare disease can often make individuals feel isolated and misunderstood. However, in this vast and interconnected world, nobody should...reactionscomments
Reach for the Stars! Why Media Representation MattersRecently, I had the privilege of attending Portland Pride. The weekend was jam-packed with all sorts of events and parties celebrating the...reactions3comments
Managing Overwhelm: Giving Ourselves Permission to Take a MomentReacting versus responding. There's a difference between them that can be ignored or forgotten. Reacting is that gut punch reflex that tells...reactions2comments
Dear Caregiver...As the sounds settle down for the night and your child falls asleep, your night is just beginning. You ensure that everything...reactions5comments
Fertility Preservation for Rare Disease WarriorsIn a time marked by heightened awareness and discord surrounding reproductive health, caregivers of children with rare diseases carry a unique burden...reactionscomments
Exploring Non-Drug Pain Management OptionsChronic pain, unfortunately, seems to accompany rare diseases too often. I began having chronic pain early on with my rare disease, and...reactionscomments
My Strategies for Living With a Rare Disease Long TermLiving with a chronic rare disease is not for the faint of heart. For most of us, there is no finishing line...reactions12comments
Benefits of Taking an Advocacy BreakSince becoming a rare disease mom, I have been relentlessly dedicated and solidly committed. However, more so now than ever, I have...reactions5comments
My First Rare Disease ConferenceRecently, I had the opportunity to attend a national conference for the rare disease that is narcolepsy. This conference had a plethora...reactions2comments
Grappling With the Possibility of Having Another Rare DiseaseMy mother has the same rare diseases that I have and among her many chronic health conditions, she also has worsening vision...reactions2comments
Parenting a Child With a Rare Disease and Reflecting on the Power of PauseThe day my precious daughter was diagnosed with a rare disease is recorded in my heart, forever reminding me of a story...reactions3comments
