Guest blog posts and podcast interviews
Ehlers-Dan… What? Most people - and sometimes even medical professionals - do not know how to spell Ehlers-Danlos syndrome at all, let alone that they would know anything about the various symptoms that are associated with the rare illness.…
Learning to accept life with a chronic illness
It is not easy to live with a chronic condition. All of a sudden, your whole life changes, and nothing is like it used to be. You fall into a big hole that does not seem to have a bottom, and it is challenging to get out of it again. However,…
Interview with The Good Place actress Jameela Jamil
I recently had the pleasure of interviewing actress and advocate Jameela Jamil for ABILITY Magazine.
Jameela Jamil is an advocate for social justice, body neutrality, LGBTQ rights, and for a while now, she has also been using her public…
New Newsletter: The Chronic Pain Partners Post
John, the CEO of EDS Awareness and a dear friend of mine, asked me to send out this new newsletter once a month. It will include useful information about all things EDS: resources, important events, articles and more. I plan to make…
Why I have changed my opinion about therapy as a chronically ill person
Only two years ago, I would have never considered therapy. Well, I guess life changes, and even my stubborn self can change her mind. Up until today, I have a bit of a love-hate relationship with therapy, but I feel it changed my life for the…
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…