About

The Kintsugi Chronicles is a storytelling that supports people living with Ehlers Danlos Syndrome.

Kintsugi: The Japanese Art of repairing broken objects with gold. The repair becomes a beautiful part of the objects history, rather than being seen as a flaw.

Our Goal

This is a storytelling project to help people understand more about life with Ehlers Danlos Syndrome. Our goal is to give patients hope and validation, while also using our stories to enhance social and medical support for everyone living with this poorly understood connective tissue disorder.

These aren’t perfect stories as the trauma of what we've experienced can make it hard to share, but they’re ones that need to be told after a lifetime of silence for too many people.

History

The Kintsugi Chronicles was born from Meg Hill's belief that our bodies and lives are not ruined by what we’ve endured. Like Kintsugi, our fractures can be filled with gold, becoming part of the beauty rather than something to hide.

Meg started offering free, virtual photo sessions to patients with EDS in 2023. These photos became visual reminders of the beauty that can co-exist amidst the pain.

While recovering from occipital cervical fusion and detethering surgery, Bethany Daman came across a post that Meg had made on the Kintsugi Chronicles Instagram account. Bethany scheduled a virtual photoshoot, and we bonded over our shared struggles to access healthcare and be believed by doctors when seeking care for severe EDS complications.

"I got the photos back and started tearing up because Meg made my home look less like a space filled with traumatic memories related to my illness and more like a space filled with beauty. She used natural light to help me visualize sunshine and hope beaming throughout the same space that carries such brokeness, pain, and fear." - Bethany.

After hearing about Bethany's passion for storytelling, Meg asked her if she wanted to partner to increase the impact of the Kintsugi Chronicles project. Together we are dreaming up ways to use each of our skills to help patients with EDS tell their stories.

"We are still in the early stages of this project and would love for you to be part of writing more of our history by getting involved behind the scenes with Bethany and I, or sharing your story as a patient. Please reach out if you have any questions." - Meg.

Share your story

Volunteer

The Kintsugi Chronicles Team

If you have been impacted by EDS, have some spoons to spare, and are passionate about storytelling + advocacy, we would love for you to get involved!

Meghan Hill (she/her)

I am a multi-talented artist, photographer, and healer with a passion for capturing life's most precious moments in their truest form.

My journey as an artist and photographer has been shaped by my own struggles with chronic illness and pain, which have taught me the value of empathy, creativity, and self-expression. It is my mission to co-create with my clients, capturing their unique beauty and spirit in a way that feels authentic and true to who they are. I believe that everyone's story deserves to be heard and celebrated. You can find me at @meghanhill.co on Instagram and www.meghanhill.co/.

Bethany Daman (she/her)

I am a communicator and storyteller whose interest in amplifying the voices of marginalized populations has been heavily influenced by a personal struggle to access medical care as a disabled woman.

My life lately has been heavily impacted by the neurological complications I experience as a result of my EDS. In 2025 I was fused from C0-C2 and had my spinal cord detethered. I'm no longer bed bound and I am privileged to be finding new ways to experience joy and meaning amidst the pain and trauma. You can find me at @bethanydaman on Instagram.

Volunteer