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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, with time, you learn […]
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 platforms to speak out about her life with Ehlers-Danlos syndrome and many comorbid conditions. In our interview, […]
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 this a place for every one of us to connect and hope to share some […]
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 better, and I don’t only see my therapist when […]
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 2016. Maybe this text can help you if you are […]
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 during 2020 and until now. So how do I […]
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 I dying? “I […]
In my role as journalist for ABILITY Magazine and as advocate for the Ehlers-Danlos community, the German organization Chronisch Cool contacted me and connected me to Ian Harding, better known as Ezra Fitz in Pretty Little Liars. Ian is a popular actor, teen choice award winner, author, and passionate advocate for the lupus community. I […]
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’ had to be canceled, and nothing really went as planned. But the safety of our community comes first! Therefore, we decided […]
Introduction Disability is an abstract concept many non-disabled people cannot fathom. People with disabilities might have a broad spectrum of limitations; they can be any age, gender, and have diverse backgrounds. Their disability can be visible in the shape of a wheelchair, cane, or brace; or it could be invisible – not to be seen […]
I have the great honor to be working with Ability Magazine, one of my favorite publications by and for people with disabilities. Some of my work: Director Sarah Stewart and her all-female crew gave great insight into many of the challenges people with chronic illnesses have to face all the time, and by including such […]
Interviews and Podcasts: EDS Awareness Podcast with Dr. Linda Bluestein I had the honor to be interviewed by Dr. Linda Bluestein, an EDS expert for a podcast featured by EDS Awareness. In this interview, we discuss the challenges of making ’We Are Visible’, my personal goals for the next years, and the plan for future […]
