English publications
2020
Fight Like A Warrior Blogpost about ‘We Are Visible’: https://www.fightlikeawarrior.org/post/we-are-visible-a-documentary-about-living-with-an-invisible-illness
Why I made a film about EDS — EDS Society
Why I raise awareness – for AwareCauses
The blog of the academic journal BMJ Medical Humanities published my review of the film “Who Am I To Stop It”
How My Ehlers-Danlos Journey Inspired Me to Create This Documentary – The Mighty
“Trust me, I am Sick” Review – Ability Magazine
100 years of service – Easterseals – Ability Magazine
Tom Steyer talks about his disability policy and more – Ability Magazine
#StayTheF**kAtHome – People belonging to the COVID-19 risk group speak out. – ABILITY Magazine
AB 2283: A Rare Disease Council and Ombudsperson for California’s Rare Disease Population – ABILITY Magazine
‘El Candidato’: A documentary about Bryan Russell, the first man with Down syndrome to run for public office. – ABILITY Magazine
Meet Haben Girma: disability rights advocate and first deaf-blind Harvard Law School graduate. – ABILITY Magazine
Vint Cerf — Co-creator of the Internet and Email (Video and Audio) – ABILITY Magazine
Accessibility and Inclusion: ‘This is who we are’ – PBS KIDS, a model for all media – ABILITY Magazine
How YAI, Next for Autism and Cure SMA are supporting their members during COVID-19 – ABILITY Magazine
‘Lego Oma:’ German grandma creates Lego ramps to access buildings and imagination – ABILITY Magazine
2019
“Misdiagnosis: The Global Epidemic We Should Be Talking About” – an investigative article for The Mighty.
“Why disabled journalists should report on disability” – a commentary for The Columbia Journalism Review.
2018
My first documentary about the lives of previous and current residents of Laguna Honda’s Positive Care Unit in San Francisco is published.
“16 Things the people who decide who qualifies should know” for The Mighty
“12 easy ways to be a better friend to someone with a chronic illness” for The Mighty
“23 consequences of misdiagnoses people with EDS had to deal with” for The Mighty
“5 Career Paths That May Be Great for People With EDS” for The Mighty
“11 Must-Read Blogs and Websites for Ehlers-Danlos Syndrome Newbies” for The Mighty
“40 Brilliant Ways to Make Ehlers-Danlos Syndrome Medical Devices More Fashionable” for The Mighty
“Disability Advocate Belo Cipriani Creates Oleb Books, a New Publishing House for Writers With Disabilities” for The Mighty
“5 Strategies to Master a Day at School or Work With Ehlers-Danlos Syndrome” for The Mighty
“18 Gifts to Give Your Friend With Ehlers-Danlos Syndrome” for The Mighty
Firsts is a mini documentary series about several authors contributing to the book “Firsts – Coming of Age Stories by People with Disabilities” by Belo Cipriani.
Firsts – Episode 1: David-Elijah Nahmod
Firsts – Episode 2: Caitlin Hernandez
Firsts – Episode 3: Sam E. Rubin
All videos with descriptive audio for the blind and closed captions for the deaf
2017
“When I was challenged to share how I really feel about my EDS” for The Mighty
“Finding the humor in my husband buying me diapers” for The Mighty
2016
“What You See and Don’t See About the Woman in This Photo” for The Mighty
“To myself when I struggled to accept my Ehlers-Danlos Syndrome diagnosis” for The Mighty
“When a Doctor told me not to think about my Ehlers-Danlos Syndrome so much” for The Mighty
“Dear Ehlers-Danlos Syndrome – a letter from your host” for Patientworthy
“When a man at the airport noticed how much pain I was in” for The Mighty
Here’s What I Would Say To The Patients Who Are Being Told Their Disease Is “Not Real” for Global Genes
“HOW DOES IT FEEL TO BE A SECOND CLASS PERSON?” for strength/flexibility/health/EDS
“Tips for traveling from Europe to the United States while being chronically ill” for EDS Wellness
Medical article about the gene Tenascin-XB and the correlation with various Ehlers-Danlos types for EDS Wellness
“My struggle to feel deserving of love as a woman with chronic illness” for The Mighty
2015
One chapter of the book: “Our Stories of Strength – Living with Ehlers-Danlos syndrome“
“Why I Wish I Opened Up to the Flight Attendant About My Invisible Illness” in The Mighty:
“A long journey to diagnosis” for Suffering the Silence:
“How people look at you if you are using a wheelchair without being paralyzed” for the Zippy Zebra
“10 things EDS has taught me” for Patientworthy
2013
GRIESSL, Martin H., et al. Structural insight into the giant Ca2+-binding adhesin SiiE: implications for the adhesion of Salmonella enterica to polarized epithelial cells. Structure, 2013, 21. Jg., Nr. 5, S. 741-752.
2011
STURM, Karina U., et al. Crystallization and preliminary crystallographic analysis of an Ig-domain-encompassing fragment of the giant adhesion protein SiiE from Salmonella enterica. Acta Crystallographica Section F: Structural Biology and Crystallization Communications, 2011, 67. Jg., Nr. 11, S. 1371-1374.
German publications
2020
My experiences with chronic illness in the book “Der HWS-Stammtisch” by Simone Theisen-Diether.
Der verlängerte Arm des da Vinci – an extensive article about the advantages and disadvantages of robotic surgery for the Austrian “Ärzte Woche”.
Interview with Wheelymum about considering to have children as a chronically ill woman – “Kinder bekommen als chronisch Kranke“. Teil 1
Part 2 interview with Wheelymum about chronic illness and having children
Interview about EDS with “Seltene Krankheiten Magazin”, a magazine about rare illnesses
The website “Waisen der Medizin” published a blog post about einen my film
‘Frührentner wär’ ich auch gern!” – A column about misconceptions surrounding people with invisible disabilities for Raul Krauthausen
Wenn alle anders läuft als geplant – A personal blog post about my journey with Ehlers-Danlos syndrome for ‘Diagnose Ungewiss’
“Du siehst heute fit aus! Das heißt, du warst nie wirklich krank.” – Raul Krauthausen
Unsichtbar behindert in Zeiten einer Pandemie – Die Neue Norm & University Freiburg
Unsichtbare Behinderung – sichtbare Rentnerin Mitte 20 – Die Neue Norm
”Toll, ein Mann der trotz Behinderung bei dir bleibt” – Die Neue Norm and Raul Krauthausen
2019
Die Ehlers-Danlos-Syndrome mit Schwerpunkt auf dem hypermobilen Typ – an academic article for Springer about the Ehlers-Danlos syndromes.
Tag der seltenen Erkrankungen – eine Betroffene erzählt – a personal essay about my experiences with Ehlers-Danlos syndrome for the Leading Medicine Guide in Germany written for rare disease day.
Ehlers-Danlos-Syndrom – mehr als nur beweglich – a journalistic article about the Ehlers-Danlos syndromes from a patient’s perspective published by the Austrian Ärzte Woche.
Sonja Böckmanns life with the rare condition syringomyelia in the Leading Medicine Guide Blog.
Neumarkter will zu den Paralympics – a report for the Mittelbayerische Zeitung
Christoph is 15 years old and wants to compete as a skiing pro at the Paralympics in 2022. Recently, he was chosen to be part of the Paralympic skiing team and is training hard to accomplish his dream.
Ein Leben im Ungewissen – an article about postural orthostatic tachycardia syndrome in the Austrian Ärzte Woche
Raus der Blase – an article about gene therapy for severe, combined immunodeficiency (SCID) in the Austrian Ärzte Woche
Behindert, aber nicht genug – an opinion piece about my experiences with an invisible disability for German disability activist Raul Krauthausen
Unsichtbar behindert: Chronische Darmbeschwerden im Alltag – an opinion piece about chronic gastrointestinal issues for activist Raul Krauthausen
Inklusion, ja! Studieren mit Behinderung, nein! – an Option piece about inclusion in Germany for Raul Krauthausen
2018
“Das Monterey Bay Aquarium” in Museumsmagazin
“Auf einem Bein durchs Leben” in Süddeutsche Zeitung
Article about Christoph, a 14-year-old who was in an accident in which he lost one leg when he was only three years old. Now, he is an athlete that trains for the Paralympics.
English version of the article can be found here.
“Vier Jahre im Diagnostik-Limbo” in Süddeutsche Zeitung
Article about my life with a rare, chronic condition called Ehlers-Danlos syndrome.
2017
“Warum darf ich nicht einfach liegen bleiben?“ in Müttermagazin
(Article about Marlon, an eight-year-old who lives with an invisible and rare disease)
English version can be found here.
Travel report about San Francisco
Feature about the Exploratorium in San Francisco in the German magazine museum.de
Exploratorium Article as pdf
Travel report about Hawaii – “auf der Suche nach dem Aloha Teil I”
Travel report about Hawaii – “auf der Suche nach dem Aloha Teil II”
“Zwischen Kind, Arbeit und dem Selbst“ in Tipi
(Article about a single mom between child, work and herself)
Travel report about Hawaii – “auf der Suche nach dem Aloha Teil III”
The De Young Museum in San Francisco in the German magazine museum.de
De Young Article as pdf
“30 Ärzte lagen 12 Jahre lang falsch: Die Medizin-Odyssee der Denise B.“ in Stern online magazine
(Article about a German woman who was misdiagnosed for 12 years and by 30 doctors)
English version can be found here.
Das Mastzellaktivierungssyndrom in MTA-Dialog (deutscher Ärzteverlag)
(Medical article about Mast Cell Activation)
My second book is published: Wenn der Kopf zur Last wird – Mein überbewegliches Leben
The Legion of Honor in the German magazine museum.de
Legion of Honor Article as pdf
“Ein Kongress der Hoffnung schenkt” for the German Ehlers-Danlos Initiative
(Report about a dentist conference where I spoke about Ehlers-Danlos syndrome)
EDS Initiative report about dentist conference
2016
My first book is published by Tredition: Wenn der Kopf zur Last wird – Mein langer Weg zur Diagnose
Letter to the editor “Diagnosen sammeln wie Briefmarken“ in FAZ, in response to “Manipulation der Krankenkassen. Wie krank ist Deutschland wirklich?“
Interview with Christoph Glötzner, a very special young man
English version can be found here.
2015
“Wenn der Kopf zur Last wird“ in Schattauer Rheuma und Arthritis
(Medical article about cervical spine instabilities)
“Das Ehlers-Danlos-Syndrom vom hypermobilen Typ und die schwerwiegende Komplikation der cervicalen Instabilitäten“ in the magazine of the German Ehlers-Danlos Initiative
(Medical article about Ehlers-Danlos syndrome and spinal instabilities)
“Instabilitäten der Halswirbelsäule und die Schwierigkeit bei der Diagnostik“ in MTA-Dialog (not accessible to the general public)
(Medical article about cervical spine instabilities and the difficulties to diagnose them)
Personal essay about dysautonomia in the German Blog “Potsplatzblog“
“Das Ehlers-Danlos-Syndrom mit Schwerpunkt auf dem hypermobilen Typ und dessen Begleiterkrankungen – eine Literaturübersicht“ in the Journal für Mineralstoffwechsel
(Medical article about the Ehlers-Danlos syndromes and their comorbid conditions)
“Das Ehlers-Danlos-Syndrom“ in MTA Dialog (not freely accessible)
(Medical article about Ehlers-Danlos syndrome)
