With thousands of patients in need of prompt treatment and only a handful of surgeons in the United States who can operate on them, a crisis is bound to ensue. People with CCI (craniocervical instability) deal with a wide range of frightening neurological symptoms and hit dead ends with local doctors. Our community is in desperate need of education on CCI for current providers and an increased interest for medical students to pursue surgical careers involving our patient population. How could they ever know what to do with us when they were told that they would never encounter a patient with these conditions- if they were told about them at all. Access to appropriate and timely care is essential for best treatment outcomes. Follow for updates on the film as well as educational resources on CCI to come soon! #cci #eds #heds #awareness #edfc2025
TW// medical gaslighting, gore
It is pretty incredible looking back on this undergrad project from summer 2024. I was fresh off of the first time experiencing a strokelike episode and had to return to college for my final year. Today is the second day after my cranialcervical fusion and posterior fossa decompression. I am very pleased with the results so far. Trust yourself. You know the answer. #ehlersdanlossyndrome #cranialcervicalinstability #cci #basilarinvagination #medicalgaslighting
For the past few years I have been enduring increasingly concerning neurological symptoms that have caused me to need life-changing neurosurgery from a highly specialized neurosurgeon. It has taken me a while to accept that my symptoms have become so disabling that I can no longer work. A few weeks ago me and Kyle traveled to New York to get the help of an expert neurosurgeon on my genetic condition (hypermobile ehlers Danlos syndrome) and how it has affected my head, neck, and brain. I am currently living with multiple dislocations in my neck every single day. It has caused damage to my brainstem and leaves me at risk for paralysis. So I am going forward with neurosurgery to correct the issues and get the relief I deserve to live my life as fully as possible. But…this crap is expensive ! And blue cross blue shield just dissolved their contract with the hospital my neurosurgeon is at. So, I’m asking for help from my loving community of friends and family to get through this time and secure the surgery I need. Thank you for any support or shares. The gofundme link will be in my bio.
went to New York and all I got was this fiber optic cable in my brain. Thanks mamdani. (If you’re squeamish don’t look at the last slide but really I just look like I have good signal) 🛜
Getting neurosurgery in the coming months. It has been a long time coming fighting for the proper diagnosis and treatment. My story isn’t unique. And I plan to use my brain for advocacy once it’s in working order. Thanks for your patience while I’m under construction.
#ehlersdanlossyndrome #cranialcervicalinstability
Prepare yourself for @flatroomvr newest music video “Every Second Counts” directed by @dannyhukmedia and @madixfair . It will be releasing this Friday 02/20/26!
It is International Day of Persons with Disabilities 🥳🎉
Today I am celebrating my physical and mental resilience through all stages of functioning. I have been navigating the healthcare system since I was in elementary school. At the time, I had an ultra-rare autoimmune disease and we had no idea that I also had Hypermobile Ehlers Danlos Syndrome. Recently, I have been fighting for access to neurosurgery that I need to restore my quality of life. This week, I was finally offered a craniocervical fusion after two years of some pretty insane symptoms. I even made a whole short film about it before I had answers. Thank you to @dannyhukmedia for beautiful cinematography and the cast featuring actors with and without disabilities who embodied the experience of medical gaslighting so fully @jescaruss@adam.conig@jsungtaepark@mcmorrowdean
I celebrate those who came before me, those researching ways to improve diagnostics and treatment, and those in my life who support me unabashedly.
Do yourself a favor and check out one of my favorite documentaries, Crip Camp. The true story of how a group of disabled people met at a summer camp and fought for legislation to protect the rights of disabled people.
my rambling thoughts on accessibility in the arts and my experiences as someone who has a dynamic disability. my health has been a particular struggle recently and I am realizing that these struggles are part of who I am as a person and an artist. I appreciate your support as I continue to navigate disability and the film industry (:
In what ways do you stay creative when your functioning is impacted? Let me know below!
#disability #accessibility #disabilityawareness #awareness #disabilityadvocacy #advocate #film #art #industry #career #director #writer #editor #access #accommodation #invisibleillness #dynamicdisability #ehlersdanlossyndrome #college #school #production #producing #theatre #musicaltheatre #performance #drama #singing #vocal #vocalperformance
