Help Rebecca Fight Ehlers-Danlos Syndrome

Hi, my name is Lauren and I started this GoFundMe to help my amazing friend Rebecca who is drowning in the cost of her medical care. Rebecca is an amazingly accomplished award winning director who suddenly became ill 2 years ago, forcing this independent woman to leave LA and move back in with her mother who became her caretaker. Subsequently diagnosed with hEDS, POTS, MECFS, MCAS, gastroparesis, etc., Rebecca's medical bills, even with insurance, are piling up.

Most recently Rebecca has been struggling with a heart arrhythmia called SVT which makes her heart rate spike to unsafe levels. This has necessitated many ER admissions and ambulance transports which are costly. The day after going through an ablation where the doctors burned away extra electrical pathways in her heart, Rebecca was admitted to the hospital. She has been inpatient for two weeks now and is forced to pay an extra $300 out of pocket per night for a private room, a necessity because her MCAS causes dangerous reactions to scents, etc. This is on top of what insurance won't cover for the hospital stay. She cannot be discharged until stabilized which is proving to be a struggle. Complicating her heart issues, she has a PRKG-1 gene mutation which predisposes her to serious aorta issues such as aneurysms.

An invasive cardiopulmonary exercise test showed severe exercise intolerance due to mitochondrial dysfunction that prevents Rebecca's body from making the necessary components to effectively pump her blood through her body to her muscles. The results of this test supported her MECFS diagnosis as well.

To manage her hEDS (a genetic connective tissue disorder) she has to travel 3 hours round trip three times a week to specialized physical therapy in Rhode Island. Her insurance limits how many sessions they will cover and the out of pocket cost is about $1400/month ($75/session).

Between multiple medications that aren't covered, copays, and ambulance rides that's another $2300/month. Her mother is her main caretaker which means that she loses money from having to take off of work to take care of Rebecca.

On top of this routine care, Rebecca desperately needs Tethered Cord Surgery which will mean further medical debt.

This is an absolutely amazing human who wants nothing other than to return to her pre-illness life. Her strength in the face of what she endures daily inspires me daily.

Can we help get Rebecca back on her feet? (Literally!)