This website has been online since the end of 2014, and a lot of very positive things happened until then. And I want you to be part of it!
I find it to important to use my personal story to raise awareness for Ehlers-Danlos syndrome and its comorbidities and I believe, every voice counts!
Writing is my main coping strategy, and I handle my emotions and negative experiences through it. I also try to actively change things to the better in Germany and publish essays and articles on different blogs in German and English.
I hope this page gives you insight into my life and I want to encourage all of you to move something or someone in your unique way.
In the end of 2014, this website,
my Facebook site:
In March, my first little German article „Wenn der Kopf zur Last wird“ was published in the magazine „Schattauer Rheuma und Arthritis“:
Also in March, another German article „Das Ehlers-Danlos-Syndrom vom hypermobilen Typ und die schwerwiegende Komplikation der cervicalen Instabilitäten“ was published in the magazine of the German EDS organization „EDS Initiative“:
In May, my first English essay was published along with a lot of other people’s EDS stories in the book:
„Our Stories of Strength – Living with Ehlers-Danlos Syndrome“
Again in May, another German article about cervical spine instabilities and the problems to diagnose them was published in the magazine „MTA Dialog“ (only available for members of MTA Dialog)
In July, I was able to share my essay „Why I Wish I Opened Up to the Flight Attendant About My Invisible Illness“ with „The Mighty“:
A first interview about my life was published in a German magazine called „Focus“ in July.
In August, my first TV interview was broadcasted by Neumarkt TV
In September, I shared an essay about dysautonomia with the German blog „Potsplatzblog“:
„A long journey to diagnosis“ was published on the website of „Suffering the Silence“ in September:
„Do I deserve to be loved? Relationship with Ehlers-Danlos Syndrome“ published by „My Invisible Life“ in September (website not active anymore)
Also, „The Zippy Zebra“ shared one of my essays „how people look at you if you are using a wheelchair without being paralyzed“ in September:
In October, I wrote another essay for „My Invisible Life“ with the title: „What does it cost me to pretend to be normal“ (website not active anymore).
In November, I was very proud to announce that I published my first scientific-like article with the title: „Das Ehlers-Danlos-Syndrom mit Schwerpunkt auf dem hypermobilen Typ und dessen Begleiterkrankungen – eine Literaturübersicht“ in the „Journal für Mineralstoffwechsel“:
Another article appeared in the German MTA Dialog with the title: „Das Ehlers-Danlos-Syndrom“ in December (not publicly available)
„Patient Worthy“ shared an essay called „10 things EDS has taught me“ in December:
„What You See and Don’t See About the Woman in This Photo“ is my second essay I shared with „The Mighty“
In January I published the first part of my personal story as a book.
In February something amazing happened. Shemar Moore helped me to raise awareness for EDS and nominated us as “Baby Girls of the Day”. He enabled us to reach a huge audience.
Additionally in February, I created a new project. A website where all people with chronic illnesses can share their stories. It is the first German page of its kind.
Another little piece written by me the Mighty published in February:
In March, my first book was available as print book (paperback and hardcover) as well as a new ebook format.
In April, I was invited to write a little guest blog about my life and my new project “Holy Shit I am Sick” for Nora, who talks about depression, anxiety and borderline.
In May, I was allowed to share my new project “Holy Shit I am Sick” with an German organization for rare anemias. (German article)
Another article, in which I processed a negative experience with one of my doctors, was shared by the Mighty in May:
“When a Doctor told me not to think about my Ehlers-Danlos Syndrome so much.”
Right to the end of EDS Awareness Month May I was able to publish another one of my articles with Patientworthy: “Dear Ehlers-Danlos Syndrome – a letter from your host”.
In June, the Mighty published another one of my articles: When a man at the airport noticed how much pain I was in.
Here’s What I Would Say To The Patients Who Are Being Told Their Disease Is “Not Real”
for Global Genes in July:
My friend Kendra in July published my article HOW DOES IT FEEL TO BE A SECOND CLASS PERSON? in her online magazine “strength/flexibility/health/EDS” :
In August, my first German podcast was created. I am mainly talking about my life with several chronic illnesses:
I wrote a guest blog for my friend Denise. An open letter to myself right before my EDS diagnosis with information I wish I would have had back then.
Here is a guest blog for my friend Kendra from EDS Wellness. It is about how to successfully travel from Europe the US to see my specialists:
Another guest blog for Kendra and EDS Wellness, this one is about Tenascin XB and EDS:
My struggle to feel deserving of love as a woman with chronic illness für The Mighty
Letter to the editor “Diagnosen sammeln wie Briefmarken” in the German newspaper FAZ:
German Newspaper: Neumarkter Tagblatt, interview with Christoph Glötzner, “Sein Motto lautet: Niemals aufgeben!”
“When I was challenged to share how I really feel about my EDS” for “The Mighty”
“Warum darf ich nicht einfach liegen bleiben” for “Müttermagazin” (German)
My life with EDS featured in German newspaper (“Auf einen Blick”)
Finding the humor in my husband buying me diapers – The Mighty
Articles about my life with EDS in “die neue Post” and “Fernsehwoche”
EDS in the German newspaper “Stern”
“So tickt… Karina Sturm” – Interview with Rehacare
German article about mast cell activation
My second book is available online: Wenn der Kopf zur Last wird – Mein überbewegliches Leben
My first English interview with “Invisible Not Broken”:
In November Jürgen Grunert (German Ehlers-Danlos Initiative) and I spoke at a conference for dentists about Ehlers-Danlos syndrome (German documents)
“Bekennervideo” about my life with Ehlers-Danlos Syndrome in “Bento” (German):
Dan from MyTherapy has asked me to write a guest blog post about my way to diagnosis:
The German magazine Lea published a story about patients with rare diseases:
Jetzt.de published my experiences with medical marijuana:
Tom Beck supports the German Ehlers-Danlos-Initiative.
Vier Jahre im Diagnostik-Limbo – Vom Leben mit einer seltenen Erkrankung in Süddeutsche Zeitung. (My life with Ehlers-Danlos syndrome)
My first film which is a short documentary about previous and recent residents of Laguna Honda hospital’s Positive Care Unit in San Francisco is published on YouTube.
“16 Things the people who decide who qualifies should know” for The Mighty
“5 Career Paths That May Be Great for People With EDS” for The Mighty
“18 Gifts to Give Your Friend With Ehlers-Danlos Syndrome” for The Mighty
Firsts is a series of short documentaries featuring the authors of ”Firsts – Coming of Age Stories by People with Disabilities” by Belo Cipriani.
“Misdiagnosis: The Global Epidemic We Should Be Talking About”– an investigative article for The Mighty.
Die Ehlers-Danlos-Syndrome mit Schwerpunkt auf dem hypermobilen Typ – an academic article for Springer about the Ehlers-Danlos syndromes
Rare disease day – eine Betroffene erzählt – for the German Leading Medicine Guide Blog.
Wie ist es mit einer Krankheit zu leben, die keiner kennt – a Podcast Interview with BR2