From Reactive to Proactive: Self-Administered TreatmentThere's been a big change this year in how I approach my rare disease, hemophilia A. I'm treating myself at home once a week. Until now, I have always treated... By Shawn Decker3 min readBookmark for laterReactions0reactionsComments1 comments
Tips for How to Set Boundaries With OthersMore likely than not, if you're reading this, then you've likely experienced someone crossing your boundaries as a chronic illness/rare disease patient, telling you or implying that your condition isn't... By Jenny Jones3 min readBookmark for laterReactions0reactionsComments4 comments
Journey to a Rare Disease DiagnosisGetting a new rare disease diagnosis can be a difficult undertaking. Some conditions, such as narcolepsy, are so misunderstood that it can take years to get an official diagnosis! The... By Tatiana Corbitt2 min readBookmark for laterReactions0reactionsComments10 comments
Starting a Family When You Have Congenital Adrenal HyperplasiaCongenital adrenal hyperplasia (CAH) is a genetic condition that can affect people of any sex. This is a rare condition that can require lifelong treatment. If you or your partner... By Editorial Team 3 min readBookmark for laterReactions0reactionsComments0 comments
Calling Out with GraceI try to approach life by considering others' perspectives, not just mine. Sometimes, though, I fail at this. As a rare disease advocate, I'm not free of or above unintentional... By Jenny Jones2 min readBookmark for laterReactions0reactionsComments3 comments
Disclosing Rare Disease NeedsWhen living with a rare disease, how often do you disclose your needs? Daily? Weekly? Monthly? Living with a rare disease usually means that other people aren't well-informed about my... By Tatiana Corbitt2 min readBookmark for laterReactions0reactionsComments2 comments
Rare Disease, Death, and No Clear-cut AnswersI have been fortunate to have my mother and grandfather to share my rare disease journey with me, as one of our shared rare diseases, familial adenomatous polyposis (FAP), is... By Jenny Jones3 min readBookmark for laterReactions0reactionsComments2 comments
The Pain of Misunderstanding Recently, I thought I had found a group of friends who would stick by my side, who understood what I was going through, or at least tried to. I live... By Tatiana Corbitt2 min readBookmark for laterReactions0reactionsComments7 comments
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 into such a mindset when living with a... By Jenny Jones3 min readBookmark for laterReactions0reactionsComments2 comments
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 empathetic and flexible. In encounters with people who... By Jenny Jones3 min readBookmark for laterReactions0reactionsComments4 comments
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 for oneself in social situations. Here are a... By Jessica Hanson3 min readBookmark for laterReactions0reactionsComments3 comments
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 and at various levels of government. In my... By Jenny Jones2 min readBookmark for laterReactions0reactionsComments0 comments
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 I am about to share here. But I... By Gina Miller3 min readBookmark for laterReactions0reactionsComments5 comments
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 have to face these challenges alone. The rare... By Elle Cole2 min readBookmark for laterReactions0reactionsComments0 comments
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 beautiful and diverse LGBTQIA+ community. As a queer... By Tatiana Corbitt3 min readBookmark for laterReactions0reactionsComments3 comments
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 us we must act now, not later —... By Jenny Jones3 min readBookmark for laterReactions0reactionsComments2 comments
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 it is what led to my diagnosis of... By Jenny Jones2 min readBookmark for laterReactions0reactionsComments0 comments
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. Hard days can drag into bad days, which... By Tatiana Corbitt3 min readBookmark for laterReactions0reactionsComments12 comments
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 found a crucial need to pause and refresh... By Alex Gaudlap2 min readBookmark for laterReactions0reactionsComments5 comments
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 of people attending, including people with narcolepsy (such... By Tatiana Corbitt2 min readBookmark for laterReactions0reactionsComments2 comments