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...reactions6comments
Shining a Light on Rare DiseasesAs a young mom raising a child with a rare disease, I've learned that feeling pressure from uncertainty and heartache is normal. My son's diagnosis of an ultra-rare disease turned...reactionscomments
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...reactions20comments
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...reactionscomments
Transitioning to Adult Care With Congenital Adrenal HyperplasiaCongenital adrenal hyperplasia (CAH) is a lifelong condition that affects the adrenal glands, causing hormonal imbalances. For those with CAH, moving from pediatric to adult medical care is critical. But...reactionscomments
Navigating Overnight School Trips When Your Child Has a Rare DiseaseAs a parent of a child with 2 chronic conditions, preparing my daughter for an overnight school field trip without me was a challenge. However, we successfully navigated this journey...reactions2comments
Early Intervention Gave Me HopeWhen I first heard, "Your child has a global developmental delay," my heart shattered. At 22, a new and young mom, I knew something wasn't quite right the day my...reactions1comment
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...reactions4comments
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...reactions2comments
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...reactions3comments
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...reactions5comments
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...reactions2comments
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...reactions3comments
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...reactions7comments
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...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 the doctor reassured us each time we asked...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 the right treatment for you. But did you...
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...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. And with more symptoms or health issues to...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 for oneself in social situations. Here are a...reactions3comments
