Matti Orr's Emergency Support Fund

Our beloved friend Matti Orr has been battling ongoing and extreme health issues and needs our help raising some funds. He’s currently hospitalized at NYU Langone with a critical blood clot, which adds on to a long list of health issues he’s been experiencing (Ehlers-Danlos syndrome, postural orthostatic tachycardia syndrome, aortic dilation, a mishandled spinal tap in response to cerebrospinal leakage, a staph infection). All the details are in the long form below but we love our friend and we encourage you to donate and pass this around!

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Our dear friend Matti Orr has been grappling with some life changing health complications which culminated in him being admitted last week to NYU Langone Brooklyn with a life threatening condition.

Matti was diagnosed with Ehlers-Danlos syndrome last year - a connective tissue disorder that primarily affects the skin, joints, and blood vessel walls. One of the more serious problems he faces is an aortic dilation along with postural orthostatic tachycardia syndrome, and he has been privately dealing with how to navigate treatment. After multiple hospitalizations, he has no definitive solution and will need to continue to pursue long-term treatment from specialists.

He was hospitalized for a week with a cerebrospinal fluid leak with no explanation from doctors as to what may have caused it or how to treat it. There have been talks of surgeries while he continues to deal with rib subluxations and chronic pain. To make matters worse, he also suffered from a staph infection at the beginning of September and while admitted to the hospital, he received a botched spinal tap. After he was discharged, he had to return to the hospital the next day for a blood patch, which was an extremely invasive and painful procedure that required significant recovery time.

During this current hospitalization, they found that Matti has a blood clot (thrombus) in the superior mesmeric artery next to his heart which provides arterial supply to the small intestine and ascending colon. Part of the clot or plaque is believed to have broken off and made its way into his intestine, causing further complications and pain.

He has been at NYU Langone Hospital since January 19th and will need multiple outpatient procedures and therapies upon discharge, in addition to a lengthy recovery time. Doctors are expecting Matti to be on medication for three months following discharge, specifically for this newest known issue of clotting. He will have to figure out what caused such a serious clot, which is extremely rare in someone his age, and monitor the damage done to his organs following this hospitalization.

In addition to rehab therapy to help with the autonomic dysfunction caused by EDS and PoTS, he will need Ehlers-Danlos syndrome specific therapy 3 times a week which is $200 per session. Even with his current insurance and a sliding scale, these medical bills will be expensive.

His sole source of income is from jobs that continue to get more strenuous due to his physical limitations and health restrictions. Because of rapidly changing factors and the nature of his work, Matti will not be able to carry on with his normal day-to-day life for quite some time or be able to work at the capacity he was prior. Just before this hospitalization, he had started his first film job in over a year when work was scarce amidst the writer and actors strike. Unexpectedly, he was hospitalized again during his third day on the job. He had no choice but to leave his work and will ultimately lose his insurance and the care team he has established as a result.

As he enters a place of financial crisis with a lack of income, medical bills, insurance denials and appeals, he still has no clear solution to these medical emergencies in view. Matti is in dire need of mutual aid to survive as he navigates this and needs to be able to focus on his recovery without added stressors.

If you have the means, no donation is too small. We are looking forward to seeing Matti back on his feet ASAP.