COVID destroyed Maya’s health: Please help!

Maya was a School Nurse until COVID destroyed her health: She needs your help!

Our dear Maya Lindemann contracted COVID-19 in March 2020 and has suffered from severe Long COVID complications ever since. Maya’s condition is utterly debilitating, she has been bedridden for over a year, often unable to speak or read. Many of her symptoms are exacerbated by Chiari, the cerebellum pushing into the spinal column and impeding cerebrospinal fluid (CSF) flow.

Thankfully, an Arizona-based team of neurologists that specialize in complex cases like Maya's has given her hope that she can undergo treatment and surgery that they believe will lead to an improvement in her debilitating symptoms. Even with great insurance, the specialty care, treatments, surgery, co-pays, medications, and supportive costs (caregiving, lodging, transportation) are unbelievably high.

Please help Maya by donating and sharing her story. Every dollar counts!

What Your Donation Can Do:

$10 - Several days of hydration packets that she needs to manage dysautonomia

$50 - One pain medication copayment

$100 - Massage/Cranio-Sacral therapy to alleviate symptoms of dysautonomia

$500 - One round of injection therapy

Medical Expenses (out of pocket)

Surgery and hospital copay est: $15,000+

Monthly: $10,200. Maya will need at least 6 months at this level of expenses to get through surgery and recovery.

Before Long COVID, Maya brought her passion and energy to everything she did, from working as an RN at SMMUSD supporting students & families in need, to volunteering as an active AAUS Scientific & Exhibit Diver at the Aquarium of the Pacific, or dedicating weekends to the Catalina Hyperbaric Chamber. She became a Robert Wood Johnson Clinical Scholars Fellow for her work in early childhood health, in particular partnering to bring mental health services to the classroom. Maya pursued life with an adventurous spirit and invested her time and energy into serving the community. Now she struggles to sit upright in bed.

Healthcare & frontline workers like Maya who dedicated their lives in service to others and got sick early in the pandemic are still stuck in the chasm between the accepted outcomes of death and recovery. Please help Maya get the treatment and surgery she needs to regain function.

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For those interested, you can read more specifics about Maya and her condition below.

Her CA Assembly Long COVID testimony, quoted in BuzzFeed can be read here .

Long Covid turned into Myalgic Encephalomyelitis (ME/CFS): A “living death”

ME and its associated comorbidities is a brutal neuro-immune illness that many Long Haulers develop. It is marked by Post Exertional Malaise (PEM), a type of metabolic dysfunction in which any type of exertion (mental or physical) brings on new or worsening symptoms 12-48 hours after activity (which can be as minimal as talking or reading). The average person with ME scores as more disabled on quality of life surveys than those with multiple sclerosis, stroke, diabetes, renal failure, lung disease, heart failure, and cancer. Among the 25% of severe patients like Maya, ME is referred to as a “living death.”

At its worst, Maya describes her illness as steps away from being “locked in.” There are days, weeks, months at a time during which her body becomes so crashed that she cannot even reach over to pick up a drink, and her brain feels like a staticky tv on fire. The exertion associated with attending a previous medical appointment triggered an episode of debilitating Post-Exertional Malaise so severe that, for six months, she was unable to read or write more than a few sentences at a time.

A Constellation of Comorbidities

She also developed a constellation of connected illnesses that frequently accompany ME/CFS, each of which is disabling in its own right. Comorbidities common among hypermobile/EDS patients like Maya include dysautonomia, specifically Postural Orthostatic Tachycardia Syndrome (POTS); Mast Cell Activation Syndrome (MCAS), Chiari and Craniocervical Instability (CCI).

Maya’s autonomic nervous system is profoundly affected. Her severe case of POTS causes a range of symptoms that include an inability to sit upright or stand, extreme dizziness, debilitating cognitive dysfunction (brain fog), severe sensitivity to light, sound and temperature, and a racing heart rate. Mast Cell Activation Syndrome causes her profound and profuse inflammatory responses at the drop of a hat, with the most frequent symptom being severe prolonged GI distress.

A Hopeful Treatment

Her expert complex disease and neurological team believe it highly likely that Chiari is exacerbating all her symptoms. Consequently, they are hopeful that decompression surgery (removing bone at base of skull to make more room and restore CSF flow) will lessen the severity of her symptoms and make her other comorbidities easier to treat. Currently they are optimistic that conservative management and treatment can stabilize Craniocervical Instability and prevent the need for additional surgery. There are very few Chiari specialists, and even fewer who understand how hypermobility syndrome/EDS can cause complications that lead to failed chiari surgery outcomes if not properly considered.

Maya is seeing Dr. Saperstein at the Center for Complex Neurology who can direct her care with the right surgeon and provide treatments both before and after surgery so that she has the best chance of regaining function.

Unfortunately, due to historical lack of research and investment priority, the complexity of post-viral illnesses (ME, POTS, MCAS etc) is not well understood in general medicine. Those who specialize in the conditions with which Maya now lives are few and predominantly out of network in order to allow them to provide the best and most current treatments that are also frequently not covered by insurance. Specialist care and treatments are EXTREMELY expensive.

Learn more about the illnesses affecting Maya

Long Covid

ME/CFS:

POTS/Dysautonomia:

Mast Cell Activation Syndrome

Hypermobility Spectrum Disorder/EDS in relation to Chiari