FDA Approves Gene Therapy: A Rare Disease Parent Advocate Reflects on Hope and Challenges AheadToday, I want to share with you the mix of emotions that have flooded my heart as a 15-year rare disease parent...reactions3comments
After a Rare Disease Diagnosis: My Avalanche of ComorbiditiesWhen I was diagnosed with my first rare disease, I got sicker. What? Of course not. Getting a diagnosis doesn't change how...reactions3comments
Mourning the Loss of the Old MeI’m often asked, “How did you come to terms with how your rare disease changed your life?” or “How did you mourn...reactionscomments
Summer With Sun SensitivityI love summer — the sunny weather, staying light outside later, and vacations. I live in an area filled with parks, trails...reactionscomments
Do You Take Rare Disease Rest Days?As a person who suffers from a rare and chronic disease, every day is a calculation dependent on my energy levels and...reactions2comments
Caregiving, Advocacy, and the Drive to Keep GoingIf you are a caregiver or a parent of a child with a rare disease, do you ever feel alone, confused, or...reactions1comment
Disclosure in the WorkplaceWhen it comes to your rare disease, have you ever struggled in the workplace over who to tell anything to? I have...reactions10comments
How Educating Myself About Treatments Probably Saved My Lungs (If Not My Life)The day I was diagnosed with MAC lung disease, alarmingly, my pulmonary doctor's first question to me after confirming the diagnosis was,"How...reactions9comments
My Rare Disease Does Not Make Me a BurdenI recently came across a journal article discussing the "challenges" of parenting a child with my rare disease. This triggered feelings of...reactions1comment
Groin Stronger: How My Body Is Learning to Trust Itself AgainWhen I injured my groin putting on a pair of pajamas last year, I had no idea it would lead to a...reactionscomments
Walking a Fine Line as a Squeaky Wheel: Communicating With DoctorsI once told someone about their healthcare, "You have to be the squeaky wheel." Later, a provider corrected me with the disclaimer...reactionscomments
When Rare Disease Needs Don't Make Sense to OthersLiving with a rare disease comes along with many complications – some medical, some financial, some psychological, and some social. In my...reactions4comments
'It Takes a Village...' Building a Supportive Rare Disease VillageWhen you become a parent, people say you will have a village that will be there for you every step of the...reactionscomments
How Clinical Trials Are Transforming the Future for Rare Disease WarriorsPrior to becoming a rare disease caregiver, I must admit that I overlooked and even doubted the significance of clinical trials. Historical...reactionscomments
6 Ways to Navigate Advocacy BurnoutAdvocacy burnout is real. Some days, I'm just so tired of talking about my autoimmune conditions, navigating popular platforms, and battling uneducated...reactionscomments
How I Gradually Changed My Relationship With Medical PTSDMy rare disease experiences began when I was 8 years old, and it wasn't long after that I developed medical post-traumatic stress...reactionscomments
Fighting for Rare Disease Medication CoverageLiving with a rare disease comes with a variety of complications. Some of these complications are physical due to the medical nature...reactions3comments
Living With Primary Biliary CholangitisPrimary biliary cholangitis (PBC) is a lifelong condition that causes inflammation in the bile ducts in the liver. Over time, this can...reactionscomments
Community Views: What Makes Us UniqueLiving with a rare disease can sometimes feel all-consuming. It can take up so much of your time and mental bandwidth. But...reactionscomments
Getting Emotions Out: Why It Matters and How to Do ItEmotion suppression is something I frequently witness, and at times, I am guilty of doing it myself. I know firsthand and am...reactionscomments
