Sitemap - 2024 - Rare Disease Girl

Another year of survival - birthday reflections

Food and Freedom - the hospital journey continues

And Healing Begins Again - My Hospital Journey Continues

The Emergency Surgery - Lessons in the Unexpected - Part 3

It's an Emergency! Lessons in the Unexpected - Part 2

Lessons in the Unexpected

When your worst photo is all over the internet

My LEAST favorite feeling

Taylor is back in the newsfeed with more tips for hospital stays & life as a patient

Weird week ahead. Relax your jaw.

Was I my own ghost?

When A Liar Steals Your Dreams

A Self-Care Tip Everyone Can Use

When your toddler helps with your infusions

A surprising link between surgery + depression + cognitive decline

This isn't easy to talk about

A digital mini-meditation break

Rise in Love

When Your Life Story Is A Little Too Exciting For Doctors

Today, you are my advocates: aHUS Awareness Day 2024!

aHUS/TMA Expert Q&A

"I want pasta and fireworks and a dog!"

When Your Disease Has a "Bad" Name, Should Patients & Caregivers Be Part of the Discourse?

Happy Ever After Moments

Seasons of Change

Should I tell my employer? The risks of medical disclosure.

Caregiving is hot - Taylor's latest pod appearance

The History of aHUS - a mini-report on my disease

Reason to Celebrate

Facing a difficult diagnosis

The Taylor-Diet

Asking For Help Takes Courage

The Butterfly Effect - In a Time of Chaos, Spreading Love Matters

Donating Blood Can Help Save Lives, Including Your Own

Taylor Health Update - When No News is Good News

Depression and Diagnosis

For your summer road-trip listening pleasure

My Life in Song

Thanks AGAIN, HuffPost! Another Lovely Feature

What My Near Death Experience Taught Me About Love

Encore: How to choose a movie when you might die before the end...?

Parenthood for Zach Started in a Hospital Closet

How to Help Save Your Own Life

Year in Review: Life After My Lay-off

My Hospital Hacks

How to Support Someone with a Rare Disease

Writing an Apology Letter to My Butt

Welcoming Back My Butt: How Almost Dying Helped Me Love My Body

Clawing My Way Back

Motherhood - My Life's Most Epic Adventure

Reflecting on the AHUS Conference in Disney World

Cultivating Resilience + Sea Glass

Good Vibrations - A Playlist

Good News TODAY

How to Reduce Medical Procedure Anxiety

Infusion Interview: Zach + Taylor on the impact of their family art project

The Power of Chalk Butterflies 🦋

Skiing with a Ghost

Taylor Health Update - A New Little Mystery

100 Rare Disease Girl Posts!

Hey Dr. Google - How to Avoid Misinformation

A Wave of Miracles - Part 2

Why the Kate Middleton Conspiracy is Getting Extra Annoying

Feeling unsafe in your own body

A wave of miracles

Taylor Does The Moth

Shower of Joy

Rare Disease Day

Graduating from Dialysis Part 2

Graduating from Dialysis Part 1

Happy Anniversary Rare Disease Girl - A Valentine's Day Audio Story

Infusion Interview- Life Update with Zach and Taylor

Tips on how to be heard in a hospital

Number one trending article on Apple!?

It's Rare Disease Month

When a Happy Day Turned Harrowing- Zach shares his story

July Turns Two

How Do You Spell That? Rare Disease Podcast

In the Kingdom of the Ill - Part 2

In the Kingdom of the Ill - Part 1

Moving mountains... and kidney labs

My Survivor List

Happy New Years