Posts
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Hi, this is me: Karina
Hello, and welcome to my Blog about all things chronic illness and disability.
My name is Karina, I am a German native but have been residing in San Francisco for six years now, and I live with a variety of chronic conditions, including…
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EDSed Episode 1: The Norris Lab
EDSed is our new series of full-length interviews with international EDS experts.
These educational interview series with journalistic (news) quality is complementary to our webinar recordings and another free resource we provide for…
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Book Review: Holding It All Together When You’re Hypermobile
For our Chronic Pain Partners Post edition of November 2022, I reviewed author and fellow zebra Christie Cox's new EDS book called Holding It All Together When You're Hypermobile. In this article, we will provide more information on the book's…
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We Are Visible Too! Episode 1: Sarah Rightmire
We Are Visible (Too) is an ongoing mini-film series portraying people with EDS all across the globe. In this mini-documentary series, I will continue on the We Are Visible - a feature-length film about people with EDS - journey and add a…
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Interview with Dr. Pradeep Chopra regarding the psychological and psychiatric aspects of the Ehlers-Danlos syndromes and hypermobility spectrum disorders
Introduction
EDS expert and pain specialist Dr. Pradeep Chopra contacted Chronic Pain Partners to speak about a recently published review on the psychological and psychiatric aspects of Ehlers-Danlos syndrome. Dr. Chopra has been…
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Interview with Dr. Norris on finding the genetic cause(s) for hypermobile EDS and much more
For Chronic Pain Partners, I had the honor to speak with Dr. Russell “Chip” Norris from the Norris Lab at MUSC, a research laboratory dedicated to finding the genetic cause(s) for the hypermobile Ehlers-Danlos syndrome. Sturm speaks…
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Jules Machias about their EDS journey and new middle-grade book Fight + Flight
For our Chronic Pain Partner Post newsletter, the Chronic Pain Partner media team is excited to introduce the EDS community to the new middle-grade* fiction book “Fight + Flight,” which features a character with EDS! I had the…
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Interview with EDS advocate Donna Sullivan, TCAPP, about wrongful child abuse allegations and medically complex children
For our Chronic Pain Partners Post newsletter, I spoke with Donna Sullivan, board member of The Coalition Against Pediatric Pain (TCAPP). Sullivan lives with EDS and has several affected children as well. In this interview, she shares…
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Jeannie Di Bon’s Zebra Club App – A Review
“Wow,” was the first word that came to my mind when I started to exercise with Jeannie Di Bon’s new program: The Zebra Club. My feelings regarding Jeannie’s new app were very similar to when I read Diana Jovin’s book Disjointed, which…
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Cheers, to a new New Year’s Eve tradition: Gratitude
Can you believe that the year is almost over? Again? I feel like since the pandemic started, time has flown but also stood still at the same time. Unlike 2020 - we can all agree that 2020 should just be canceled entirely, right? - I have mixed…
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Not losing yourself as a chronically ill person
My back hurts, sitting in an uncomfortable grey metal chair with red and white tape next to me, so nobody can sit down right beside me. I stare at the white wall that features a giraffe and a leopard - at least I think it’s a leopard, but…
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Chronic Illness, the bad days & coping
“Wow, I feel like my condition has stabilized a bit. Finally, I can take part in regular life again!” I thought a few weeks ago. Life has been challenging throughout 2020. Actually, challenging isn’t even the right word. It has been a…