Interviews and Podcasts:
EDS Awareness Podcast with Dr. Linda Bluestein
I had the honor to be interviewed by Dr. Linda Bluestein, an EDS expert for a podcast featured by EDS Awareness. In this interview, we discuss the challenges of making ’We Are Visible’, my personal goals for the next years, and the plan for future distribution of the film.
Listen to the Podcast:
Read the transcript:
Video Interview with EDS Wellness and Kendra Neilson Myles
Kendra Neilson Myles, the CEO of EDS Wellness and health expert, interviewed me via Skype and we spoke about the challenges of making ‘We Are Visible’, the cast, future screenings, and my plans for distribution.
Watch the video:
Q&A with Practical Pain Management
Since I was diagnosed with EDS and many related conditions, I have used my passion for writing to raise awareness of neglected communities, such as people living with invisible illnesses. I hated that I often didn’t feel seen or heard and wanted to change this.Read the full Q&A here: https://www.practicalpainmanagement.com/patient/conditions/ehlers-danlos/documentary-spotlights-real-struggles-living-chronic-invisible
Q&A With Hypermobility Happy Hour
As a guest at ‘Hypermobility Happy Hour,’ I spoke about my film, my future plans, and my life with EDS.
Podcast with Jason Herterich (Discomfort Zone Podcast)
Discomfort Zone is a podcast about chronic pain, Fibromyalgia, disability, and much more. Jason spoke with me about my experiences as someone who lives with chronic pain due to EDS, my film, and future plans.
Professional Reviews of ’We Are Visible’:
Oh Twist! – EDS Advocate and Educator
Not only was the story telling masterfully handled, weaving her own diagnostic journey into those of her six international subjects, but their stories were so moving and compelling I was sunk. Bring tissues!Read full review here: http://ohtwist.com/becoming-visible
Jeannie Di Bon – Physical Therapist specialized in EDS care
But not one of the six participants in the film felt sorry for themselves. Remarkable strength. The film demonstrated resilience, strength and determination – qualities I believe you need to survive in the EDS world. It shouldn’t be a fight, but for many people it is. We Are Visible is going to be a valuable tool to show the world what living with an invisible illness is really like.Read full review here: https://jeanniedibon.com/wellness/this-film-is-going-to-close-the-gap-on-eds-education/
David-Elijah Nahmod – Journalist and Film Critic
It’s a profoundly moving and eye-opening film that will hopefully find an audience outside of the Ehlers-Danlos community. It’s a film that calls for compassion and understanding, and explains in no uncertain terms exactly what Ehlers-Danlos can do to a person’s body.Read the full review here: https://belocipriani.com/disability-advocates/life-with-ehlers-danlos-syndrome-chronicled-in-new-documentary/
Karina’s love and respect for these people and their stories shine through every frame, letting the viewer in on a world that may have been unfamiliar to us.Read the full review: https://patientworthy.com/2020/02/05/we-are-visible-how-karina-turned-advocacy-into-art/
Whether you are an ally or an individual with a disability yourself, I do encourage you to screen the film when you have the chance. It is truly a testament to what we, as people with disabilities, experience and overcome on a daily basis.Read the full review here: http://www.mydiversability.com/blog/2020/4/11/we-are-visible-an-honest-testament-to-overcoming-thriving-with-ehlers-danlos-syndrome
Press Releases & Blog Posts:
The organization EDS Wisconsin released general information about my motivation to produce ’We Are Visible’ on their blog:
The organization EDS Awareness lists several screenings on their website:
Fight Like A Warrior
‘We Are Visible’ didn’t only give a voice to its contributors. It also gave me a voice. It helped me realize that there are so many people with similar experiences to mine. All of their perspectives helped me to become a better person, a better journalist, and they made me feel validated for the very first time.Read the full blog post: https://www.fightlikeawarrior.org/post/we-are-visible-a-documentary-about-living-with-an-invisible-illness
Journalists and filmmaker alike talk about these people but not with them. I wanted to change this, so ’We Are Visible’ directly involved all of its contributors in order to represent this community in an accurate and truthful wayRead full post: https://www.ehlers-danlos.com/we-are-visible/
Slowly, but gradually, I dug myself out of the hole I was hiding in, and with every article I wrote, I felt more alive and more visible. I dedicated my work mainly to medicine and science, but when I officially signed up for a journalism degree in Scotland, it hit me! I realized that not only was I feeling invisible and unheard, many other members of my community must feel just like me. And I needed to actively do something about it!Read the full blog: https://themighty.com/2020/02/ehlers-danlos-syndrome-documentary/