Posts

Side view of a woman with short, brown hair holding a camera with a big microphone in front of her face and filming out to the ocean.Frank Marx
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Coming soon: Documentary film about the Ehlers-Danlos syndromes

The Ehlers-Danlos syndromes are a group of rare connective tissue disorders that can affect every part of the body. We Are Visible wants to show the full picture of the condition including the complex presentation of symptoms, to the complications…
The Mighty Logo showing white letters on red background
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Newsletter for The Mighty

Part of my work for The Mighty included creating the weekly Ehlers-Danlos syndrome newsletter. Here are some examples:  EDS Newsletter September 20 EDS Newsletter September 27 Epilepsy Newsletter October 2 EDS Newsletter October…
Screenshot of an article called "23 Consequences Of Misdiagnosis People With EDS Had to Deal With"
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Call-out articles for The Mighty

The following are my pieces based on what the community shared with The Mighty. Many people living with Ehlers-Danlos syndrome need to apply for disability benefits at some point of their journey. This is what they wished the people who decide…
Karina wears a red The Mighty Shirt and a blue flower in her short, brown hair. She is smiling.
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Internship at The Mighty

During September 2018, I had the great pleasure to work as a temporary staff member for The Mighty, the largest online magazine for people living with chronic illnesses and disabilities. The Mighty shares articles written by authors that have…
Karina is holding a sign saying: Yes, we care!

Yes, we care! – A campaign for children with rare diseases

The Care-for-Rare Foundation contacted me a few weeks ago and asked if I wanted to join their new campaign. Of course, I wanted to! And I would like to recommend this project to you. Why? Because the Care-for-Rare Foundation is committed to…
Butterfly which is a lateral cut through the spinal cord as well. It is striped like a zebra.

German Podcast

My German podcast contains interviews with people living with disabilities and chronic illnesses, as well as with medical professionals. If you speak German, check out the ”5-questions-for” interview series: https://www.holy-shit-i-am-…
Denise sits in her wheelchair on a beach. She is waring ankle, knee and wrist braces. Also she wears white pants, a blue shirt and red lipstick. Her hair are red and short. In the background is the ocean and some green grass.
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30 doctors have been wrong for 12 years: The medical odyssey of Denise B.

Denise lived with excruciating pain. Her skin was covered in hematomas and no doctor could help her. It was twelve years later, when the surprising diagnosis was revealed, and it came close to salvation. Early in Denise’s life doctors…
Medical marijuana flowers on table

Pain medication, legalized marijuana and chronic illness

I spoke to Monica who lives with a rare and painful illness called Ehlers-Danlos syndrome. Find out how she copes with the daily problems, what medication she takes, and what it means to her to live in CA where marijuana is now completely legal. Bild:…
A bottle of Care by Design medical cannabis on a table
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Medical marijuana – a medication in CA, and a drug in Germany

Germany and the US have many apparent differences. However, the gap couldn’t be larger in terms of people discussing marijuana, especially for medical use. Uncountable patients that suffer from chronic pain live in Germany, and many of them…
Close-up of green marijuana plant

Living with medical marijuana as a German in California

What happens if you move from Germany to San Francisco without proper pain medication? You try cannabis for the first time! If you want to read this article, it is available at: Journos From The Blog Interested in learning more about medical…
This picture shows a simplified illustration of the RCCX gene locus which includes Tenascin XB
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Medical article about the gene Tenascin-XB

In this medical article, I describe the association between the Tenascin-XB gene and specific Ehlers-Danlos syndrome types based on current research. I, therefore, read more than 40 scientific publications and referenced many in this article…