Share Your Story

Share your story about life with EDS

Maybe you're struggling to explain your reality to friends and family.

Or maybe you want to use your story to help doctors understand more about patient experiences.

Whatever your situation may be, The Kintsugi Chronicles project helps Ehlers Danlos Syndrome patients tell their story by:

Offering free, accessible photoshoots from the comfort of your home (all you need is a smart phone and a place to prop your device).
Helping you document your story in writing.
Publishing your story online.

Submit your story

Name*

Your email*

Pronouns

How old were you when you got diagnosed with Ehlers Danlos Syndrome?

Where do you live?

Do you have a website/blog we can link to or Instagram account we can tag?

Is there a moment in time that's really shaped your journey with EDS? Maybe a long diagnostic journey, a big surgery, time spent bed bound/in debilitating pain, getting your first mobility aid (approx. 500 words is great, but more or less is fine too // if you prefer to type into a Google Doc or record a voice memo, please add the link to your file here // tips for sharing this "personal narrative" can be found on the "storytelling tips" page)

What has your body been up against physically and medically that has shaped your journey? (we're talking major symptoms, surgeries, accessibility barriers, comorbid diagnosis)

When things have felt most difficult, what has helped you survive or keep moving forward? (maybe it's friends/family? other people's stories? meditation?)

How has this experience changed you- emotionally, spiritually or creatively?

Are there any themes that feel central to your story right now? (examples: endurance, grief, softness, faith, isolation, rebirth, visibility, surrender, strength)

Are there symbols, objects, environments, or textures that feel meaningful to your healing or survival?

What do you hope that sharing your story will give you?

Is there anything you'd like Meghan (your virtual photographer) to be especially mindful of during your photo session- physically or emotionally?

Sign up for a photoshoot + share your story

Do not feel the need to answer all of the questions, whatever you have capacity for (and feel inspired by) is great.

If you're wanting tips to help you know what to share, check out the "storytelling tips" page that we've put together.

Once you submit this form, we will reach out to schedule your photoshoot.