1 HOUR Study with Me with Music - REAL TIME youtu.be/PjjMlirrY4Y via YouTube #studytwt #studygram #studytwtph

Plan & Reflect with Me | lo-fi Music & Journal | October 2020 youtu.be/rc2-KvEWBb0 via YouTube

A fellow journalist diagnosed with #POTS…so was her producer. There are multiple people on my team who have been diagnosed in just the last year. Keep telling your stories. Keep advocating. Keep the hope. Wishing many good days ahead to Emily Kress. wnep.com/article/news/h…

💜November 28th is Giving Tuesday! 🌟Doubling Our Donors' Impact with the Holiday Matching Grant Challenge! Until January 31st, an anonymous donor (whose family understands the journey of Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) will match

Jennifer Brea🦒 I wish I had known this way earlier than when I started having more occipital pain and upper cervical symptoms...🤩 oh...but wait, my physicians still won't believe it anyway.🤨

Hi everyone! I just updated the story about why we ended up with this surgery plan for my CCI/AAI Thank you for sharing and donating! ❤️ gofund.me/81382f73

As a person with rare diseases, I forgive the doctors who don't understand our symptoms because they can't. Not everyone has 10/10 pain on a daily basis. 🤕

It has been feeling so grateful for the amount of sharing and donating for the past 3 days. ❤️ If you haven't checked out. Please follow the link to my story and campaign.❤️Help a fellow zebra! 🦓 #EhlersDanlos

Really don't like to educate people on how to act on social media...but sometimes you just have to. Then you reach to your pocket for the strongest WEAPON: your WORDS. 🩷 Just be kind, Please.

Excited about the trip, not only get to perform this week, but also facing my 3rd surgery within 3 years. It has been a long journey. But we are close to the finishing line. ❤️

Just to say. crazy ideas all started with the "crazy" people. I have taken part in it. 2 hours and 50 minutes recording this week... and AI isn't helping me because it's too long. loll #occultAwareness

New post on Ko-fi! ko-fi.com/post/Ko-fi-Upd… support our new podcast "Occult Awareness" for #undiagnosed #misdiagnosis

Aella's Fight for Diagnosis Amidst Medical Gaslighting Part 1 | Occult A... youtu.be/Dm0dXqGJuGs?si… via YouTube #OccultAwarenessPodcast

Check it out! Part 2 Aella's Story Continues: Advocacy and Challenges in Chronic Illness youtu.be/N0-Fo1RPb4c?si… via YouTube

Part 1 of Dr. Hilary Merry’s Journey with EDS: Navigating the Healthcare... youtu.be/bfVQbJjGxAw?si… via YouTube

Finally caught up on a new episode of Occult Awareness. July as the Disability Pride Month , There will be 4 amazing eps coming! so look forward to them!!🙌 Listening to "Arlen's Journey: Seeking Treatment for Rare Genetic Conditions in the U.S." at buzzsprout.com/2356214/153354…

It's been a while, I am now back home.... several updates. it's going to be exciting 1/2 half the year, but also hope to have more support for ongoing PT and neuro aggressive PT.

Patient Advocacy in Action: Kiera’s Dual Journey as a Public Health Scho... youtu.be/jsA8oP-Kdaw?si… via YouTube

WFAA Feature: Denton Violinist Advocates for EDS, CCI & AAI | Thrive on ... youtu.be/88kKtFWr6Lc?si… via YouTube

I got so emotional... and checked out ... I know we all have things we felt traumatizing to relive. But that doesn't cause someone to be "unable to move their body or breath"