
A letter to myself after getting diagnosed with EDS in 2014
This is a letter I wrote to myself right after getting diagnosed with EDS in 2014. It’s all the things I would have needed to hear from doctors, friends and family. And it’s also advice I gave myself. It was published by The Mighty in…

Let’s get real. This is how 2020 really was for me.
Over the last weeks, I got many kind messages from followers of my blog, often saying, “The way you handle your life with all your conditions is so inspiring. How do you do this?” Let me try to give you an unfiltered insight into my life…

How it all began: Getting diagnosed with Ehlers-Danlos syndrome
Oh Gosh, I feel like I have told this story too many times, but you are new here, so I might as well share it again. So this is how it all began and the reason why you are here, on my Blog, today. I try to keep it short, though.
Am…

Watch ‘We Are Visible’ online ON DEMAND
My documentary film ‘We Are Visible,’ featuring people living with Ehlers-Danlos syndrome all across the globe, is now available ON DEMAND.
Unfortunately, due to COVID-19, most events and film screenings for ‘We Are Visible’…

We Are Visible – Trailers
Many of the people who know me well would tell you that I am not a person that can do ”short.” I like to talk a lot, prefer to write long articles - the more words, the better, and love to involve more than one person in order to show a…

”Nothing about us without us!” – Producing ’We Are Visible’
My film We Are Visible, a feature-length documentary about people living with Ehlers-Danlos syndrome all around the globe, is in its final production phase, and it would be the time to release a trailer now.
However, putting together…

Ehlers-Danlos documentary: Meet the people involved
We Are Visible is a documentary film about people all around the world living with Ehlers-Danlos syndrome. Today, I invite you to meet the main contributors of my film.
Ashley & Sophia
Ashley
Ashley is a mom of two, and they…

Misdiagnoses – an investigative article
Have you ever wondered if you are the only one who has been misdiagnosed by a medical professional in the past? In fact, you are in good company. Diagnostic errors are a global threat, but rarely do we hear about them. For this article, I interviewed…

Firsts – Episode 3: Sam E. Rubin
Firsts is a mini documentary series about several authors contributing to the book "Firsts - Coming of Age Stories by People with Disabilities" by Belo Cipriani.
Please enjoy Episode 3: Sam E. Rubin
Version with closed captions:
https://www.youtube.com/watch?v=KYt3ehUk-54
Version…

Firsts – Episode 2: Caitlin Hernandez
Firsts is a mini documentary series about several authors contributing to the book "Firsts - Coming of Age Stories by People with Disabilities" by Belo Cipriani.
Please enjoy Episode 2: Caitlin Hernandez
Version with closed captions:
https://www.youtube.com/watch?v=VffHRQjCkck
Version…

Firsts – Episode 1: David-Elijah Nahmod
Firsts is a mini documentary series about several authors contributing to the book "Firsts - Coming of Age Stories by People with Disabilities" by Belo Cipriani.
Please enjoy Episode One: David-Elijah Nahmod
Version with closed captions:
https://www.youtube.com/watch?v=oEuDbmmLQN0
Version…

Firsts – The Mini Documentary Series for Belo Cipriani
I had the honor to work with Belo Cipriani, a blind journalist, and advocate for people living with disabilities. Belo recently established a publishing house called Oleb Books whose mission is to represent disability in a respectful and honest…