Discovering My Family's ATTR Story: A Chance MeetingI have the Thr60(80)Ala mutation on the TTR gene on the 18th chromosome. Pretty cool. It causes ATTR amyloidosis. Not cool. 1,600...reactionscomments
Fatigue and Slow Progression: Living Between the Data and the DiagnosisApril is always hard for me. It’s the month we make the trip to Duke, the month where scans, tests, and appointments...reactionscomments
ATTR Progression: A Word We Need to Talk AboutThere is a word that rarely shows up when people talk about transthyretin (ATTR) amyloidosis. Terminal. When you search for information about...reactionscomments
Quality of Life Polls: How are You Doing?When managing ATTR means juggling medications, treatments, and basic daily tasks, quality of life can feel like an afterthought. However, a good...reactionscomments
Life as a Carrier: Year FourTo everyone touched by transthyretin (ATTR) amyloidosis; through diagnosis, genetics, or love, come sit with me for a moment. If you’re new...reactions2comments
When ATTR Holds Your Stomach HostageWhen people hear transthyretin amyloid cardiomyopathy (ATTR-CM), they naturally think about the heart. I did too. But one thing this journey has...reactionscomments
Thump Flap: Managing ATTR and PolyneuropathyThump Flap… Strange name, Thump Flap. Well, it’s a bit of a story that took a long time to happen. First off...reactionscomments
The Caregiver No One NamesTo everyone touched by transthyretin (ATTR) amyloidosis; through diagnosis, genetics, or love, come sit with me for a moment. There is a...reactions11comments
How to Practice Safe Medication DisposalToday more people are aware that old and unused drugs can be dangerous to keep around the house. Leftover drugs may be...reactionscomments
Support Your Emotional Support Animal: How to Save On Drug Costs for PetsFor many people, pets feel like part of the family. We would do anything for them just like we would for any...reactionscomments
I’m So Glad I Went: What Happened After I Said YesIn my last article, I shared how transthyretin amyloid cardiomyopathy (ATTR-CM) had changed the way I looked at something that once would...reactionscomments
Helpful Hints for Long-Distance CaregivingBeing a caregiver can be rewarding but also draining. In many cases, caregivers and those they care for live nearby or even...reactionscomments
Advocating for Yourself With Your DoctorThe process of being diagnosed with a chronic health condition can be long and difficult. People with ATTR amyloidosis often have a...reactionscomments
Fighting hATTR Amyloidosis: A Walk in the WoodsIt would be so easy just to stop fighting and give in, throw in the towel, lay down and let it take...reactions1comment
What Does it Mean to be a Rare Disease?Chances are, you or someone you know has been diagnosed with a rare disease and that is why you are here, reading...reactions4comments
What Is Medical Gaslighting?If you have ever felt dismissed by a doctor, you may have experienced a type of bias (prejudice) called medical gaslighting. Medical...reactionscomments
Coping With a New DiagnosisReceiving a new medical diagnosis can be shocking. Learning you have a chronic or terminal health condition can feel jarring and emotional...reactionscomments
10 Questions to Ask Your Doctor When You Are Newly DiagnosedIt is often hard to know what to ask, or even where to begin, when you have questions about a new diagnosis...reactions2comments
A Life Unfolding: The Beauty and Weight of a Slow FarewellI am blessed to be the wife of the love of my life and the proud mom of two extraordinary boys we...reactions7comments
The Quiet Way ATTR-CM Changes YouThere are moments in life when ATTR-CM doesn’t just whisper its presence—it takes your breath away. Not always in the physical sense...reactionscomments
