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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 with Norris about their current research and how it will change care for people with hEDS. [The final findings […]
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 pleasure to talk to author Jules Machias about their life with Ehlers-Danlos syndrome, their career as a writer, and […]
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 with Chronic Pain Partners her decade-long experience working with families accused of child abuse due to a medically complex child, […]
What is #AbleismusTötet? #AbleismusTötet is a project initiated by the German disability rights organization AbilityWatch e. V. to uncover all cases of violence against people with disabilities in German care homes. In April 2021, four disabled individuals were murdered in a facility in Potsdam, Brandenburg, which spiked an uproar by the disability community, calling for […]
The EDS & Aging Project Funny Bone Newsletter – March 2022 presented by EDS Awareness This is a community-centered project with people older than 45 who want to share their experiences about aging as a person with EDS. This project will be published as part of the EDS Awareness Newsletter in a collaboration between CEO […]
“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 I recently reviewed as well. However, I wouldn’t be much of a journalist […]
Speech at my film screening @ Chapman University Interviews Podcast with Linda Bluestein and EDS Awareness https://www.chronicpainpartners.com/webinar/we-are-visible-podcast/ Volunteer Work Newsletter for Chronic Pain Partners
The holidays are around the corner, and soon, we all will be ordering presents for our healthy or chronically ill friends and family. I don’t know how you feel about this, but I always have a hard time finding the right gift. Luckily, there are a lot of great gift guides online, and I, personally, […]
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 feelings about this year. Yes, the pandemic made […]
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 I don’t know much about wild cats. […]
“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 major disaster. When the pandemic started, a lot of past trauma that I […]
Ehlers-Dan… What? Most people – and sometimes even medical professionals – do not know how to spell Ehlers-Danlos syndrome at all, let alone that they would know anything about the various symptoms that are associated with the rare illness. I feel like this can only be changed by actively and publicly talking about EDS as […]
