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 a wheelchair and utilize it to participate in...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 advocacy burnout can include excessive fatigue, lack of...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 (DNR) order and I’m not even age 40...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
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
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
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
Living for the Good ThingsLiving with a rare disease comes along with a lot of difficulties. It can be scary at times, too, not having control over your own health. I live with narcolepsy...reactionscomments
Which Specialist Needs to Know Your Symptoms? All of Them.Time and time again, I'm reminded about the importance of telling every single one of my doctors about my health updates – including bothersome symptoms – even when it is...reactionscomments
Groin Older: Aging With HemophiliaAs a child born in the mid-70s with hemophilia, I was part of a unique generation. Access to new treatments made a more "normal" life possible, or at least one...reactions4comments
Reflecting on the People We Would Never Meet OtherwiseIt's a beautiful thing to meet someone who makes you forget your troubles. - author unknown I have always strived to see the good in every situation. I will admit...reactionscomments
