Reflecting on the AHUS Conference in Disney World
The impact of our personal stories.
Greetings Gorgeous Substack Readers,
Our little family had an amazing trip to Florida and the AHUS Conference. I got to be a keynote speaker and July got to meet Elsa and Anna from Frozen.
Wishes coming true.
This past week, I attended the Atypical Hemolytic Uremic Syndrome Conference in Disney World. I was wildly thrilled to meet folks who shared a similar experience - to be normal in a room, when I often feel so rare. Puns always intended.
AHUS attacks people of all age ranges. From children to seniors, we all have gripping stories of fear, trauma, resilience, and hope.
I was a keynote speaker and it was incredible to share my journey with everyone. Especially with folks who know the disease intimately.
Honestly, the word journey sounds too soft for the experience. Like a cruise to Ensenada or something. Our journeys are more like the Titanic. I just wasn’t sure if I was going to be Rose floating on top of a table or Jack who’s heart did NOT go on…
I’m honored that my path has led me to opportunities to talk about my disease and help illuminate a path for others who may need it.
I met a kind mother, also wrangling a toddler, who said, “I know who you are.”
She had seen photos and posts from me while in her hospital bed. She could see that despite the diagnosis - here I was, at the beach and on hikes. Sure, I had a dialysis port, but I was living a full life.
I hugged her. It can be emotionally exhausting talking about my disease, but I see talking about it has helped more people than I could have ever fathomed.
And our two little girls, and disease triggers, played together all weekend.
I’ve never been good at predicting the future. When I got off dialysis, I knew I wanted to help people but I also, somewhat selfishly, wanted my life back. I wanted to return to my identity.
For me getting laid off from my job of over a decade represented this sign that I was never, ever going back. This path chose me, in a sense.
As I watched the fireworks with Zach and my two year old at the Magic Kingdom, I was reminded that even in the stories we share with our children, the characters are usually tossed into a path of challenge they didn’t ever want or hope for. The stories July watches, from Lion King to Frozen, are about loss, stepping into the fear and the unknown, and facing our own faults and life’s unavoidable truths, and becoming greater for the experience.
After the conference, I have so many new, lovely friends who understand me in a way most cannot. That has such value.
Now, back at home, recovering from all the fun, I don’t know what my next project or paycheck will be. The future is so unclear - but I walk in hope.
This disease has taken so much from me. But the people and community around it has filled that space with connection and newfound purpose.
I just keep on turning lemons into Arnold Palmers.
Were you at the conference? Drop a comment! I’d love to hear what you thought and some of your favorite moments.
DID YOU MISS IT:
The conference had a lot of dense medical discussion and it reminded me of this piece I wrote if you happen to forget what a protein is or an enzyme or all those things you learned in tenth grade biology.
I have a disease and regret not paying attention more in biology class
Hi readers! I was so encouraged when my aHUS disease explainer did so well… I thought I would do another SUPER BASIC, VERY GENERAL explainer of science terms. THE VERY BASICS OF BIOLOGY AND THE BODY (for folks with a disease… or anybody who needs a refresher…)
If you’re new here and wondering, “what happened to this lady?” read:
I started writing this when I was on dialysis. It’s intended to be both memoir and a practical tool to help folks who might be going through something similar or those caregivers and family supporting someone with a challenging diagnosis. NOTE: This is not intended to replace actual medical guidance. Please consult your doctors on your individual challenges and situations. Please talk to your clinicians before adjusting any of your care protocols. Also names have been changed for most of my medical staff.
Thank you to CC Couchois, Roy Lenn, and Dr. Richard Burwick for your founding level donation.
I am so proud of you all the work you you’re doing and I don’t mean to sound patronizing.
I believe that my daughter might have been a lot like you if she had gotten to grow up with her disease she already had started doing outreach and had written and published about her disease when she was only 14 years old. it’s great that you are helping other people but remember that it’s also OK to just be you and to have the life that you want with your family so balance it all out and keep on being Taylor the Taylor I’ve come to know Love through Substack I love the picture of the three of you and Disney and I love the way you wrote this piece and how you made analogies to various things-that was really cool.
Excited to see what magic has in store for you next!