EducateEds

Thank you .danlos for the opportunity to share my journey with the community and other advocates! Link to watch is in my bio 😊together we can make a difference! Please feel free to reach out to learn more about these conditions and with any questions relating to your own health journey with

Thank you to for hosting an unforgettable weekend celebrating all the progress made in and looking forward to future research 🥂I was honored to have the opportunity to speak with such magnificent minds!

So honored to be presenting SUNDAY at the .danlos society ECHO summit series on neurological complications in along with internationally renowned clinicians and researchers like Dr. Petra Klinge, Dr. Frasier Henderson, Dr. David Saperstein and more! Registration closes tomorrow (link in bio)!

So honored to be presenting on Saturday as a community voice and panelist for the .danlos society ECHO summit series. My own surgeon, Dr. Frasier Henderson, will be presenting along with Dr. Petra Klinge, Dr. David Saperstein, and other internationally renowned experts in the field of EDS. Topics of discussion will be Cranio-cervical junction and Cervical spine, Spinal Disease, and Sensory and Autonomic Dysfunction. Register online by TOMORROW (link in bio)

Why are these syndromes occurring together? My friend shared this presentation by Dr. Andrew Maxwell through the ILC Foundation, where he introduced the idea of “The Pentad” as a potential explaination. Check it out on YouTube, my friends. You won’t be sorry!!

Don’t say you CAN’T help when your bias is getting in the way and you WON’T help. Suffice to say, I won’t be going back. On to the next! 💪🏻🥄🦓

I’ve had a horrible MCAS flare due to a bee sting a few days ago, so I thought I’d share what we do know about this common co-morbidity. I am one of the majority of individuals with MCAS who do not deal with anaphylaxis, though some people have such severe MCAS that they can be allergic to all food, sunlight, and everyday chemicals.

Let’s talk about easy bruising in EDS. I literally can’t remember a time when I knew where a bruise came from. We don’t know exactly why bruising occurs but it is believed that blood vessels surrounding connective tissues become fragile and lead therefore lead to more fragile skin. What’s weird is I’ll go through phases where I have only a few bruises and other times when I am COVERED. Curious how this correlated to other symptoms is 🧐 thoughts?

The EDS community is no stranger to scars. When I was recovering from my first surgery, I remember someone asking if I wanted to use a scar cream. Though I know scars are deemed ugly and disturbing in the beauty industry, I had an almost visceral reaction to the idea. Reading this passage, I now understand exactly why I felt that way in that moment. I want my body to represent the life I’ve lived and the strength I’ve drawn upon. That means I’m going to acquire scars along the way but they are not ugly or something that makes me less beautiful. They are opportunities to connect, representations of bravery, and physical evidence that despite my illnesses, my body can heal itself.

Follow along for more research and updates on instagram

Putting a brief pause on sharing research and my journey to completely focus on my health before the big day 👰🏻‍♀️💒