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 – especially if you have a medically complex...reactionscomments
Getting a Rare Disease Diagnosis: What's in a Name?Recently, a friend of mine, Fiona, visited her cardiologist. She has been having some troubling symptoms that have been going on for several years now. Although she had been to...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 favorite humans, Georgia Arnold, for her contributions to...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 to new families. I feel that they believe...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 learning experiences. One of the most enlightening aspects...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 person’s life. With the right treatment plan, most...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, so it is no surprise that this year...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 the hours fighting with insurance to get therapies...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 that help with movement. Your body uses motor...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 Preference Program is a Medicaid-based program that allows...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 learned a lot along the way. I am...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 to rare diseases: there are over 7,000 identified...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 diagnosis. Once you received your diagnosis, perhaps your...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 it ALL described me at the time I...reactionscomments
Art As Rare Disease Advocacy I have only been living with narcolepsy since my college years. When I discovered what kind of rare disease I had, at first, I was genuinely confused. I didn't know...reactions7comments
Shifting the Focus of Goal SettingGoal setting is a topic covered A LOT, and it's pretty straightforward, right? Set a goal, break it down, and work on the steps to achieve that goal. Whenever I...reactionscomments
Embracing Mindfulness: 31 Affirmations for Rare Disease CaregiversReflecting on the past year, I realize that last year was a test of self-discovery, leading me down a path I never thought I would tread. It was the year...reactionscomments
Advocacy Anywhere: Communication With Your DoctorThrough my many healthcare experiences due to having cystic fibrosis, I have experienced the power that lies in self-advocating for my health in the clinic setting. My passion is to empower...reactionscomments
New Year’s Resolutions and Rare DiseasesI'm not a fan of New Year's resolutions. I'm sure many of us have seen or done this before – we make big goals that are not necessarily attainable, and...reactionscomments
Getting Back Into Advocacy After BurnoutReaching complete physical, mental, and emotional exhaustion is a serious threat that can occur in a variety of life situations – not just in the career field. Living with chronic...reactionscomments
