Since the end of 2014 my website has been online and a lot of very positive things happened. That is why I want you to be part of it.
I find it to be very important to use my personal story to raise awareness for Ehlers-Danlos Syndrome and the comorbidities. In my opinion every voice counts.
Writing is one of my coping strategies and I handle my emotions and negative experiences through my essays. I try to actively change something in Germany and publish essays and articles on different Blogs in both languages.
I hope you get a little insight into my life and want to motivate all of you to do move something in your very own unique way.
Every time I publish something new I will post it in the Blog part of my Website.
End of 2014 my Website,
my Facebook Site:
and my YouTube Channel:
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 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 with Neumarkt TV
In September I shared an essay about dysautonomie 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
In February something amazing happened. Shemar Moore helped us to raise awareness for EDS and nominated us Baby Girls of the Day. He enabled us to reach a huge audience and we are very thankful.
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 is 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 by me 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 article 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 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 to see my specialists in the US:
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 local TV