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 laterReactions0reactionsComments0 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 laterReactions0reactionsComments0 comments
My Child May Have a Rare Disease, but I Still Dream Big Dreams for Her15 years ago, I became the mother of a daughter who lives with a rare disease. My daughter has a rare disease, but that doesn't stop me from dreaming big... By Elle Cole2 min readBookmark for laterReactions0reactionsComments0 comments
10 Empowering Tips to Prepare Your Child Living With a Rare Disease for CollegeI want to talk to you about something close to my heart – preparing your high school child living with a rare disease for college. In the words of Robin... By Elle Cole5 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 laterReactions0reactionsComments1 comments
Caring for a Child With a Rare Disease: Conventional Versus Specialized EducationSending my child to a specialized school for special needs has been a deeply emotional journey, marked by feelings ranging from hope to heartache. This decision, often fraught with complexities... By Alex Gaudlap3 min readBookmark for laterReactions0reactionsComments3 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 laterReactions0reactionsComments1 comments
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 the doctor reassured us each time we asked... By Alex Gaudlap2 min readBookmark for laterReactions0reactionsComments1 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 laterReactions0reactionsComments1 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
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 a rare disease. Complex situations and unique challenges... By Alex Gaudlap3 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 laterReactions0reactionsComments1 comments
Dear Caregiver...As the sounds settle down for the night and your child falls asleep, your night is just beginning. You ensure that everything that needs to get done gets done –... By Alex Gaudlap3 min readBookmark for laterReactions0reactionsComments5 comments
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 – the preservation of their child's fertility. As... By Elle Cole3 min readBookmark for laterReactions0reactionsComments0 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