Posts
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…
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…
EDS & Aging
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.…
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…
Speeches & Interviews
Speech at my film screening @ Chapman University
https://vimeo.com/385576868
Interviews
Podcast with Linda Bluestein and EDS Awareness
https://www.chronicpainpartners.com/webinar/we-are-visible-podcast/
Volunteer…
Gift ideas for chronically ill people
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…
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…
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…
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…
Guest blog posts and podcast interviews
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.…
Learning to accept life with a chronic illness
It is not easy to live with a chronic condition. All of a sudden, your whole life changes, and nothing is like it used to be. You fall into a big hole that does not seem to have a bottom, and it is challenging to get out of it again. However,…
Interview with The Good Place actress Jameela Jamil
I recently had the pleasure of interviewing actress and advocate Jameela Jamil for ABILITY Magazine.
Jameela Jamil is an advocate for social justice, body neutrality, LGBTQ rights, and for a while now, she has also been using her public…