Community & financial support for dysautonomia patients!

Health Care Access

Expand existing project, program, or initiative

Dysautonomia is an umbrella term encompassing 15+ conditions involving the dysfunction of the autonomic nervous system, which controls what the body does automatically (heart rate, blood pressure, digestion, kidney function, etc.). Over 70 million people have dysautonomia worldwide. One of the most common forms, Postural Orthostatic Tachycardia Syndrome (POTS), can be extremely disabling. An estimated quarter of people with POTS are too ill to work. Treatment is complex but can help significantly, yet many lack the funds and the knowledge required for adequate care. Patients struggle to provide for other fundamental needs due to illness. The number of dysautonomia patients has grown exponentially as an estimated 67% of people with long covid have dysautonomia. We have members of LADN who are homeless and those who spread out medicine to make it last. Many rely on family for financial support; not everyone has that. The LA dysautonomia community needs community & financial assistance.

LADN serves a growing population of 160+ dysautonomia patients and caregivers. To increase knowledge about treatments and to combat the isolation of illness, LADN hosts support groups, educational workshops and speakers, a peer network, and social gatherings and provides educational materials and recommendation lists. LADN will launch a financial grant program to support dysautonomia patients financially this October. We will take applications for reimbursements of dysautonomia-related bills and are considering expanding to offer grants to support living expenses. Eligible bills will include treatments from MDs and hospitals as well as other health practitioners such as acupuncturists, mental health therapists, and physical therapists. Medicine (over-the-counter & prescription), electrolytes, compression gear, health monitors (i.e. heart rate, blood pressure, & cerebral blood flow velocity), and medical travel expenses will also be eligible. Dysautonomia experts are rare, and patients are often required to travel to receive adequate care. Because dysautonomia affects so many systems of the body, treatment is complex and requires multiple doctors and multiple costly treatments. Treatments are often "off label" or experimental and getting insurance coverage can be difficult. Altogether, access to life-changing medical treatment is behind a paywall. LADN intends to help provide access over the wall for dysautonomia patients struggling under the financial burden of illness.

LA is home to a huge population. As an estimated 70 million people have dysautonomia (a pre-Covid stat - an estimated 67% of long covid sufferers have developed dysautonomia), a significant number of people in LA suffer from dysautonomia. Dysautonomia is typically an invisible illness, but it is no less disabling. POTS, the most common form of dysautonomia, predominantly affects women. Many women in LA are suffering invisibly from dysautonomia and struggling with basic needs. Disabled women are too often forgotten and maligned by society. Supporting dysautonomia patients in LA is supporting disabled women. LADN's grant program will lift up dysautonomia patients, allowing them access to medical care. This access to medical care will enable patients to live healthier lives and help many to reenter the workforce. Medical care access will help ease the financial burdens faced by dysautonomia patients, helping them to pay for the roofs over their heads and the food on their plates.

The impact of LADN's current offerings are tracked by member feedback surveys, testimonials, and number of participants. Members describe LADN as "my sanctuary and only safe space where I can share my frustrations, fears...that no one else in my life can begin to understand," "an encouraging space," and "my people." LADN will launch a financial grant program in October 2023. We will measure its impact quantitatively: number of patients awarded grants, number of grant applicants, financial amounts awarded, and number of health-related services accessed; as well as qualitatively: reports from grant awardees on the grant impact on their health & lifestyle and types of medical care accessed. Based on these measurements and surveys of the general dysautonomia patient population, we plan to evaluate whether bill reimbursement is an effective system or if the program would be more effective through means such as lump-sum awards for demonstrated need and grants for general living expenses.