The Overflowing Cup: Childhood Trauma and Mental HealthRecently, I tried a new form of therapy: hypnotherapy. After 5 and a half years of counseling, I decided that while it...reactions3comments
Why Joining Your Rare Disease Community Is ImportantWhen my son originally got his rare disease diagnosis back in 2020, I was told about a private Facebook group for families...reactionscomments
20 Essential Self-care Practices for Rare Disease Caregivers: My Journey to ResilienceBeing a caregiver for someone with a rare disease is an incredibly rewarding yet demanding role. Learning how to advocate for my...reactionscomments
Why I Made My Home Wheelchair Accessible Sooner, Not Later"Why do you think you would need wheelchair-accessible doors in your home?" I answered simply that I was previously required to obtain...reactions3comments
Recovering From Advocacy BurnoutAdvocacy burnout can look different for different people. Burnout can present itself in many different ways. Some possible signs of rare disease...reactions1comment
Becoming a Do-Not-Resuscitate PatientWhenever I encounter new medical providers at any level of care, they are often surprised to discover that I have a do-not-resuscitate...reactionscomments
Working Remotely as a CaregiverWork is a place where you can meet people, make connections, and socialize. But in this new era of working from home...reactionscomments
The Power of a Name: Why a Rare Disease Diagnosis MattersRecently, a friend of mine, Fiona, visited her cardiologist. She has been having some troubling symptoms that have been going on for...reactionscomments
The Big Craple Incident: How My Rare Disease Canceled My Travel PlansA special trip to New York City was a little over 24 hours away. I was going to honor one of my...reactionscomments
3 Ways to Help Professionals Understand Your Rare DiseaseAs our family's rare disease community (VAMP2) continues to grow, I am often frustrated with the professionals who are giving this diagnosis...reactionscomments
Embracing Diverse Coping Mechanisms as Parent CaregiversAs a parent caregiver raising a child with a rare disease, my journey has been filled with different challenges, victories, and profound...reactionscomments
Living With Congenital Adrenal HyperplasiaLiving with a genetic condition like congenital adrenal hyperplasia (CAH) can pose unique challenges. But CAH does not have to define a...reactionscomments
Fill Your Cup GiveawayThe Fill Your Cup Giveaway is now closed. Thank you for your interest! February 29th is the the rarest date of all...reactionscomments
What It Means to Celebrate Moments as a Rare Disease FamilyOn my journey, celebrating milestones isn't just about the milestone itself. It's also about our family's journey leading up to it. It's...reactionscomments
What to Know About Rare Motor Neuron DiseasesMotor neuron diseases (MNDs) are a class of diseases that affect certain important cells. These cells, called motor neurons, control the muscles...reactionscomments
My Experience With New Jersey's Personal Preference ProgramHave you heard of state Medicaid programs that allow a family member or friend to become a paid caregiver? New Jersey's Personal...reactionscomments
Questions I Ask Myself on My Healing JourneyI started my medical trauma healing quest in the early 2000s, but since 2022, I have made a consistent effort. I have...reactionscomments
What Is the Impact of Rare Disease Awareness Days?January marks the awareness day for one of my rare diseases, Moebius syndrome. Awareness is sometimes a funny concept when it comes...reactionscomments
3 Things I Learned About Doctors After My Son's Rare DiagnosisIf you or a family member are a rare disease patient, chances are it took quite some time to receive an accurate...reactionscomments
When You’re a 'Poster Child' for Your Rare DiseaseI will never forget the day I saw what the more common characteristics of someone diagnosed with MAC lung disease were because...reactionscomments
