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...reactions11comments
Are You at Risk for MAC Lung Disease?MAC lung disease is caused by Mycobacterium avium complex (MAC) germs. MAC germs are all around. They live in soil, water, household...reactionscomments
Questions to Ask Your Doctor About Living With MACIf you have been diagnosed with MAC lung disease, you might have many questions that need answers. A lot of new information...reactionscomments
Living With X-linked HypophosphatemiaX-linked hypophosphatemia (XLH) is a rare genetic condition that lasts a person’s entire life. It is caused by a mutation in the...reactionscomments
X-linked Hypophosphatemia and GeneticsX-linked hypophosphatemia (XLH) is a genetic condition. People with XLH have changes in a specific gene that affect how their body uses...reactionscomments
Questions to Ask Your Doctor When You Have X-linked HypophosphatemiaReceiving a diagnosis of X-linked hypophosphatemia (XLH) can be challenging and overwhelming at first. Whether you are diagnosed as a baby, a...reactionscomments
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...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...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...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...reactions5comments
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...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
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...reactions2comments
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...reactions5comments
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
Life as the Primary Caregiver: Insights from a Rare MomIn the rare disease space, a full-time caregiver of someone with a rare disease has a unique mindset. There is often compassion, love...reactionscomments
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
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
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
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
