As a journalist, I entirely devoted my life to inform about chronic illnesses and disability, and being personally affected by it not only fueled my passion for this topic but, above all, made me a more empathic journalist and a better human being.
Besides my journalistic work, I see it as my duty to be an advocate for people with the same conditions and to fight for a change by speaking up publicly.
I am fully aware that being a journalist and activist at the same time might create a bias, which is why I constantly reflect on my work, as well as debate my role with peer journalists.
Articles about me
Reha Care (German magazine)
Auf einen Blick (German magazine)
Focus (German magazine)
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Reha Care (German magazine)
I spoke to RehaCare about my wishes and dreams related to my chronic illnesses. -
Auf einen Blick (German magazine)
Auf einen Blick published my way to the diagnosis Ehlers-Danlos syndrome. -
Focus (German magazine)
I talked to Focus about my way to diagnosis.
Videos about me
Neumarkt TV (Local TV)
Bento (German magazine)
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Neumarkt TV (Local TV)
I spoke to Neumarkt TV about my life with Ehlers-Danlos syndrome and my way to diagnosis. -
Bento (German magazine)
Bento interviewed me regarding how I cope with my conditions and how I feel about being disabled as a young woman.
Conferences and events I spoke at
Lectures
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In 2017, I gave a public lecture about Ehlers-Danlos syndrome and dental manifestations. -
I spoke in front of 300 people in Münster, Germany. -
Together with Jürgen Grunert, head of the German EDS organization, we represented Ehlers-Danlos syndrome.
Film Screenings of my film We Are Visible
Interviews with me
EDS Awareness Podcast with Dr. Linda Bluestein
https://www.chronicpainpartners.com/webinar/we-are-visible-podcast/
Video-Interview with EDS Awareness and Kendra Neilson Myles
Interview with Dr. Abe Khoureis about living with an invisible disability
Guest interview with Beyond My Battle
Guest on the ‘Chronic Illness Support‘ Podcast with Sam Bowick – Topic Ehlers-Danlos Syndrome
Guest on the Patientworthy Podcast ‘Wait, how do you spell that?‘ – Topic Ehlers-Danlos Syndrome, my journalistic work and film
VOLUNTEER WORK FOR THE COMMUNITY
Volunteer at my local nursing home:
EDS Awareness Newsletter
If you want to learn more about my recent work as an advocate, you can read more here.
