Healthcare for Long Covid and Dysautonomia Patients

Health care access

Expand existing project, program, or initiative (expanding and continuing ongoing, successful work)

LADN seeks to aid the thousands of Angelenos who are disabled by dysautonomia and facing two main obstacles to adequate healthcare: a lack of knowledge about dysautonomia and an inability to afford treatment. Dysautonomia is an umbrella term encompassing 15+ conditions involving the dysfunction of the autonomic nervous system, which controls automatic bodily functions (heart rate, blood pressure, digestion, etc.). An estimated 79% of Long Covid cases result in dysautonomia, suggesting that 300,000+ Angelenos may have dysautonomia from Long Covid alone (Am. J. Med., CDC). Most doctors received little to no dysautonomia education, forcing patients to educate themselves while trying to cope with this complex illness. A majority of LADN’s survey respondents reported that dysautonomia has caused moderate to severe financial hardship (78%), an inability to work (57%), and unaffordable healthcare costs (61%). LA dysautonomia patients need help to identify and afford the care they deserve.

LADN aims to improve healthcare access and outcomes for dysautonomia patients through education and financial support.
Tackling the lack of dysautonomia education among providers and the subsequent burden on patients: We offer providers educational pamphlets and videos and will further our reach and impact by designing a workshop, with plans to present to 7 provider groups. For patients, we offer workshops with expert instructors in subjects specific to dys. care (ex: research, PT, nutrition) and in subjects proven to improve outcomes of chronic illness patients (ex: meditation, journaling, experiences in nature). We offer support groups where patients learn from each other. A strong majority of members surveyed report improved ability to cope with symptoms & to advocate for themselves in a medical setting. We will create a handbook for patients, explaining the illness, a plan-of-action for finding the right care and different lifestyle & treatment options.
We provide healthcare grants but plan to better address the need by adding 1-workshops on assistance programs and disability rights (recorded, creating a learning database) & 2-providing patients with health kits. Our 2023 grant program showed many patients unable to afford basic healthcare tools such as blood pressure cuffs, blood ox monitors, compression gear & electrolytes. We aim to equip 30+ patients with tools every dys. patient needs plus a walker, temperature regulator or compression boots depending on unique need.

When the support and healthcare exists to help the people so deeply challenged by the illness dysautonomia, it's heartbreaking that people are barred from aid due to lack of income or lack of awareness in the medical field. No one should have to spread out medication or choose between food or healthcare. No one should have to search for 4+ years just to get a diagnosis. We envision a future in which no one is alone in facing the challenge of dysautonomia. No patient and no doctor is left hopeless, feeling at a loss to comprehend how to diagnose and treat these symptoms. If our work is successful, there will be a ripple effect across LA County as doctors become educated on how to help their patients and patients become able to advocate for themselves and can afford the healthcare they so desperately need. Our goal is to provide the education and support that will allow people the chance to regain their sense of self amidst serious illness and their ability to live fulfilling lives.

Surveys, participation, feedback and other impact data indicate that LADN’s programs help patients access effective healthcare, with gaps in need answered in proposed expansions. In solicited feedback, LADN is described by patients as “life-changing” and a “sanctuary” and by providers as a “crucial resource” and “home base for my patients.” Multiple patients related improved health and ability to return to work. Strong survey majorities report improved 1 ability to cope with symptoms, 2 connection to community and 3 quality of life. Participation has grown exponentially (650+). From the grant program we offer, a recipient wrote: it paid for “medications I depend on to quite literally survive.” 23 applications demonstrated a need of 140k+ in healthcare costs, with most unable to afford basic aids, prompting us to begin offering health kits. We will track participation, providers educated, downloads, healthcare accessed, medical equipment awarded and health and quality of life outcomes.