Elana's Need for Complex Treatment During Covid19
Donation protected
To Whom It May Concern:
I* write in the hopes that you will hear me when no one else has. I am a 32-year-old social worker with Ehlers Danlos Syndrome, and I am dying.
The care I have been receiving from Cedars-Sinai, USC, and UCLA is not only inadequate, it is discriminatory. I have seen upwards of a dozen physicians, mostly from the field of emergency medicine since I’ve gotten much worse as my outpatient doctor’s offices close due to Coronavirus, but also specializing in the fields of cardiology, rheumatology, and endocrinology and I have a formal diagnosis of Postural Orthostatic Tachycardia Syndrome and Dysautonomia Not Otherwise Specified, Fibromyalgia, Osteoarthritis, incomplete bowel voidage, spinal stenosis, degenerative disc disease, and more, secondary to Hypermobile Ehlers Danlos Syndrome as my primary diagnosis, yet I spend more time being silenced and gaslighted in the hospital than actually being cared for. I have provided samples at the request of my clinicians only for the samples to go untested, and been poked, prodded, medicated against my wishes, and locked in a psych ward for what is actually complex trauma. Widespread stigma against Ehlers Danlos has caused ongoing gaps and delays in my care. My providers are now blaming these delays on the coronavirus pandemic, but I am experiencing severe medical neglect.
Since the beginning of my POTS flare-up on January 8, 2020, I have always been fully committed to following an appropriate course of treatment so I can get my life back, regain my income and independence, and focus full-time on advocating for my own clients as a professional Youth Advocate and a volunteer patient advocate and community organizer for others with Ehlers Danlos Syndrome. However, no one is providing me that, so instead I must speak up even louder for myself. I am not asking for a cure or a quick fix; this is a pile-up of complicated medical conditions and I understand it will take some trial and error to help me heal from the brink of crisis and manage my symptoms thereafter. However, having my physical condition and resulting distress wrongly attributed to mental illness is unacceptable. As I write this letter, I am physically shaking and emotionally spent. I barely sleep a couple hours a night, cannot eat, cannot digest food, cannot get my pain under control. My organs are failing and I'm losing weight so quickly that my scapulas are sliding out of place and I’ve moved from completely ambulatory to cane to walker.
If I am not able to see a competent physician who has experience with EDS and its most common comorbidities (co-occurring disorders), my body will soon give up. I am almost 33 and I am scared to die young, but angry, too, because my death is preventable. I am a working professional who is health-literate and holds a masters degree, so I can only imagine how terrifying it must be for someone with less privilege to try and navigate the same discriminatory system. People with EDS, rare diseases, and invisible disabilities are a protected class under the Americans with Disabilities Act and we merit the same standard of care any other patient would receive. I am hanging on and fighting as much for my EDS community (maybe more) as I am for myself.
What I need most right now is visibility, advocacy, and support. I have received some advice from the USC School of Social Work, but it is not enough. I have been working tirelessly, in spite of severe symptoms and debilitating pain, to coordinate my ample United Healthcare insurance coverage, Angel MedFlights, and care at the Mayo Clinic in Minnesota, or Center for Complex Neurology EDS & POTS in Phoenix, Arizona, where Ehlers Danlos is better understood. If there is a way you and your colleagues can advocate for this referral, or simply raise awareness about EDS and this civil rights violation, I would be grateful. I'm not asking for special treatment; I just want my medical providers to be accountable and do their job well.
Immediate Needs:
~ Referral by a Dr. to get out to AZ or MN for comprehensive treatment
~ Testing & treatment for all body systems, including testing for Gastroparesis, Dysautonomia, kidney functioning, and I also need a PICC line implant due to collapsed/failed veins, in order for my 3x weekly saline infusions to resume.
~ To stop being gaslighted, neglected, mistreated, and abused.
~ Financial support (I've been home from work since Jan 8 with no income and my regular and medical expenses)
Thank you so much,
Elana Simon
*Written with aid of a fellow social worker, with all Elana’s words
I* write in the hopes that you will hear me when no one else has. I am a 32-year-old social worker with Ehlers Danlos Syndrome, and I am dying.
The care I have been receiving from Cedars-Sinai, USC, and UCLA is not only inadequate, it is discriminatory. I have seen upwards of a dozen physicians, mostly from the field of emergency medicine since I’ve gotten much worse as my outpatient doctor’s offices close due to Coronavirus, but also specializing in the fields of cardiology, rheumatology, and endocrinology and I have a formal diagnosis of Postural Orthostatic Tachycardia Syndrome and Dysautonomia Not Otherwise Specified, Fibromyalgia, Osteoarthritis, incomplete bowel voidage, spinal stenosis, degenerative disc disease, and more, secondary to Hypermobile Ehlers Danlos Syndrome as my primary diagnosis, yet I spend more time being silenced and gaslighted in the hospital than actually being cared for. I have provided samples at the request of my clinicians only for the samples to go untested, and been poked, prodded, medicated against my wishes, and locked in a psych ward for what is actually complex trauma. Widespread stigma against Ehlers Danlos has caused ongoing gaps and delays in my care. My providers are now blaming these delays on the coronavirus pandemic, but I am experiencing severe medical neglect.
Since the beginning of my POTS flare-up on January 8, 2020, I have always been fully committed to following an appropriate course of treatment so I can get my life back, regain my income and independence, and focus full-time on advocating for my own clients as a professional Youth Advocate and a volunteer patient advocate and community organizer for others with Ehlers Danlos Syndrome. However, no one is providing me that, so instead I must speak up even louder for myself. I am not asking for a cure or a quick fix; this is a pile-up of complicated medical conditions and I understand it will take some trial and error to help me heal from the brink of crisis and manage my symptoms thereafter. However, having my physical condition and resulting distress wrongly attributed to mental illness is unacceptable. As I write this letter, I am physically shaking and emotionally spent. I barely sleep a couple hours a night, cannot eat, cannot digest food, cannot get my pain under control. My organs are failing and I'm losing weight so quickly that my scapulas are sliding out of place and I’ve moved from completely ambulatory to cane to walker.
If I am not able to see a competent physician who has experience with EDS and its most common comorbidities (co-occurring disorders), my body will soon give up. I am almost 33 and I am scared to die young, but angry, too, because my death is preventable. I am a working professional who is health-literate and holds a masters degree, so I can only imagine how terrifying it must be for someone with less privilege to try and navigate the same discriminatory system. People with EDS, rare diseases, and invisible disabilities are a protected class under the Americans with Disabilities Act and we merit the same standard of care any other patient would receive. I am hanging on and fighting as much for my EDS community (maybe more) as I am for myself.
What I need most right now is visibility, advocacy, and support. I have received some advice from the USC School of Social Work, but it is not enough. I have been working tirelessly, in spite of severe symptoms and debilitating pain, to coordinate my ample United Healthcare insurance coverage, Angel MedFlights, and care at the Mayo Clinic in Minnesota, or Center for Complex Neurology EDS & POTS in Phoenix, Arizona, where Ehlers Danlos is better understood. If there is a way you and your colleagues can advocate for this referral, or simply raise awareness about EDS and this civil rights violation, I would be grateful. I'm not asking for special treatment; I just want my medical providers to be accountable and do their job well.
Immediate Needs:
~ Referral by a Dr. to get out to AZ or MN for comprehensive treatment
~ Testing & treatment for all body systems, including testing for Gastroparesis, Dysautonomia, kidney functioning, and I also need a PICC line implant due to collapsed/failed veins, in order for my 3x weekly saline infusions to resume.
~ To stop being gaslighted, neglected, mistreated, and abused.
~ Financial support (I've been home from work since Jan 8 with no income and my regular and medical expenses)
Thank you so much,
Elana Simon
*Written with aid of a fellow social worker, with all Elana’s words
Fundraising team: Elana's Warriors (5)
Elana Simon
Organizer
Los Angeles, CA
Justin Polinsky
Team member
Ana Maria Pino
Team member
Molly Lafon
Team member
Philip Feldwisch
Team member