We've got your back! Get Emily spine and brain care

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Hello, everyone! This fundraiser is to help Emily Johnson get serious neurosurgery care, care for problems spine and brain damage has caused, and severe microclot treatment (in remission currently but may return one day).

Emily’s work in journalism, medical research, social media, public relations, fundraising, academic and book editing was cut short due to lack of care. She has had a few great work opportunities offered to her, and she is trying to take whatever freelance work she physically may be capable of under Medicaid and Social Security work program rules! In some ways, these systems are even more inaccessible than Emily’s conditions.

Emily must stay on Medicare, Medicaid and Social Security Disability Income for years moving forward to access ongoing Palliative Care, home health and specialist care keeping her alive. Without this, she can't get to better baselines to sustain full-time or part-time work.

She is now 35 years old and finally able to access care for many long-standing health issues, and she needs our help to afford this medical care which is very expensive even with Medicare, Medicaid, SSDI, financial aid, help from one medical grant so far plus Mercy Medical Angels covering commercial medical flight costs for some trips.

While Medicare pays 80 percent of Emily’s health insurance covered costs, Medicaid only covers the remaining 20 percent IF that care is in the same state Emily lives in.

Unfortunately, neurosurgeons and hematologists in the states Emily has resided in have not had the expertise or willingness to properly assess, diagnose and treat her. Emily’s neurosurgery, neurology, urology, neuropsychology, endocrinology, plastic surgery, and ear and nose and throat specialist out-of-state care is only covered by Medicare, and whatever financial aid hospitals and clinics may choose to grant her. Emily’s remote severe microclot care has been almost entirely out-of-pocket, too.

Sometimes no financial aid exists. Sometimes doctors have written off the remainder of a bill, donated to and promoted this fundraiser (thank you!) because the care is so expensive and there’s a lot of care needed, and they care deeply that Emily has been suffering severely for so long and want to help.

No agencies for Emily’s conditions exist to cover costs of lodging, rental cars and gas, rideshares, food, unexpected medical and travel delays and cancellations. Emily was not medically barred from driving but has been unable to drive since 2018 due to symptoms and poverty. She is medically prohibited from flying in small planes with unstable cabin pressure, and can’t afford the extreme costs of air ambulances, so she must fly via commercial airlines to travel for care. She also must keep her home health infusion medication and supplies she needs every day to survive kept in temperature controlled commercial cabins, and traveling with home infusion for 6 years has been difficult. Airlines have consistently provided poor, inaccessible and even dangerous conditions for Emily which have resulted in physical harms and extra costs.

Updated 2025 fundraising goals:

1) $1,500-$2,500 per trip for 2-4 more trips to New York in 2025/2026 for EDS Chiari Center specialist team care for surgery tests, specialist visits, possible neurosurgical fixes and other treatments. Each trip last 7 days to a few weeks of care time and includes: hospital costs, imaging costs, surgery recovery cost, clinic costs, lodging in hotels and AirBnbs, travel costs and food.

2) Unknown cost at this time: Local specialist care, imaging, testing costs associated with these conditions and treatment plans ordered/directed by the national specialists for local doctors to do. Luckily, most of these costs so far have been covered by Medicare, Medicaid and pro-bono care from local specialists. Aside from the severe microclot care, we have not had to use funds from this fundraiser.

3) $300-$1,500 for oxygen therapy, hyperbaric oxygen therapy or a home oxygen concentrator. Hyperbaric oxygen therapy out of the home is covered by Medicare, a home oxygen concentrator is not. $300 would cover cheap a small oxygen concentrator, $1,500 would cover the recommended 10 liter oxygen concentrators POTS, MECFS and Long Covid patients have used for decades to alleviate issues creating oxidative stress.

Emily is on Social Security Disability Income but given that she was forced to stop working at 27 due to these conditions and work inaccessibility, her SSDI isn't very much. The majority of Emily’s SSDI goes to home health and prescription copays, out-of-pocket supplements and care, and medical equipment and garments recommended by doctors. The rest of her SSDI covers her phone, home infusion care, and expensive allergy-free groceries. She lives with family for care assistance, transit, and free housing so she can afford the care she has received so far.

Thank you so much for your time and support! It takes a lot of time and energy to update this fundraiser, which Jess runs and Emily updates when she can. Jess is a longtime best friend who also ran 2017 and 2019 GoFundMe fundraisers for Emily’s housing, food and medical care. Jess keeps donations in their bank accounts, then transfers to Emily for bills and costs. This way, Emily isn’t in danger of losing lifesaving coverage or experiencing destabilizing coverage changes to her Medicaid, Medicare and Social Security benefits should personal gifts be accidentally logged by poorly organized government systems as income.

Due to severe neuroinflammation, Emily has had a very rough several years with these conditions increasing strain on oxygen and blood flow, her autonomic and muscle and nervous systems, and her entire body.

The best way to support Emily if you can’t donate is to wear a high-quality mask like an N95 mask, get vaccinated if you can, use viral air ventilation and purification in your homes and schools and businesses, avoid crowded public gatherings as much as possible weeks before being around Emily, open windows when gathering in private, continue testing for Covid and other viruses, and stay home when sick.

Not only does this protect people like Emily from dying or becoming more disabled and having to potentially repeat these expensive surgeries and treatments as a result, but it protects you from having to do the same. 1 in 10 of Emily’s surgeons’ patients doesn’t have a connective tissue disorder like EDS like Emily does at all — they just have immune damage from viruses eating away the connective tissue in their spine and organs requiring surgeries. This could happen to anyone, so we all should be cautious and take care of each other!

What Happened and What Care Has Been Covered by This Fundraiser:

She was diagnosed with MCAS at age 27 but didn’t get it treated by a real mast cell specialist until age 29, after she was put into Palliative Care at age 28, and after years of specialists ignoring and dismissing her MCAS symptoms. Severe accumulative tissue damage caused by ongoing untreated severe mast cell inflammation can be fatal, and although her MCAS is stable now, it has caused permanent tissue damage in Emily.

In February and April 2019, one of Emily’s POTS cardiologists and her first Palliative Care doctor respectively told Emily that they thought she was dying. Emily’s EDS and Mito geneticist was so alarmed by symptoms after a May 2019 appointment, she had Emily go to the ER for immediate allergic immune injections for MCAS symptoms. Emily had to be in the ER or hospital at least 20 times between 2017-2019, largely due to symptoms and damage from MCAS.

She got IV infusions at the UNMC cancer center 1-2 times weekly in 2017 in Nebraska. She moved to Georgia in 2017, and Georgia Medicaid bungled her case from 2017-2021, so she had to keep getting IV bags from urgent cares, infusion centers and ERs from 2017-2019 (or go without and worsen significantly, which is what happened during most of this time). Emily was approved for SSDI in July 2019 (Medicare kicked in 2021), which is when Emily was finally able to set up home health infusion care.

Emily has severe peripheral veinous insufficiency due to EDS, POTS and MCAS. Her right arm veins blew out with 2 PICC lines between April-July 2019. Doctors have had to use veins in her legs to give anesthesia, due to tissue trauma in her hands and arms. Since August 2019, Emily has needed a Groshong catheter central line installed in her chest so she can infuse IV bags at home daily to better stabilize her symptoms. She drinks oral electrolytes daily too but they aren’t sufficient. Drinking too much fluids orally strains the chronic gastric tissue fissures and bleeds Emily has suffered from for over a decade.

Her need for IV fluids escalated when less cerebrospinal fluid and brain blood flow began occurring in 2017 and onwards. Getting a cervical fusion and/or decompression surgery for CCI, AAI, AAO, intracranial hypertension issues could improve cerebrospinal fluid and blood flow to Emily’s brain in the future. Daily home health infusion care is critical to getting this care, but even if she can get all neurosurgeries on the table, she may need to continue home health infusion care just for EDS, POTS and MCAS issues and symptoms that will persist.

She was diagnosed with POTS at age 24 after decades of blacking out, vomiting, collapsing, losing full or partial vision and hearing, and many other symptoms POTS causes. She developed all 3 types of POTS (secondary via EDS, neuropathic POTS via childhood viruses, and hyperandrenic POTS following an Epstein Barr Virus in her early 20s). While leading her journalism graduation class ceremony in 2012, she narrowly avoided blacking out and falling off the stage! She blacked out so often singing in choirs, as a lector and altar server and church growing up, adults stopped pausing church services and just put a chair behind her hoping it would catch her falls. Emily had to limit or stop doing sports, school activities and community activities growing up and as an adult simply due to severity of POTS and MCAS symptoms alone.

POTS and MCAS (and MECFS and Mitochondrial Disease/Dysfunction, two developmental genetic energy disabilities Emily developed as a child and adult) will all remain chronic disabilities. The hope is neurosurgical care will continue to improve baseline potentials.

Tethered cord pulling down on her entire spinal column and brainstem caused issues in every region of her spine and ongoing brain damage, and also exacerbated other conditions Emily was born with or later developed.

Thanks to the help of few loved ones in 2023 (driving Emily across the country as twice as she laid in the backseat, as she could no longer sit up long enough to fly), Emily was finally able to see one of the few EDS US neurosurgeons who is also a global expert in tethered cord, Dr Klinge at Brown University in Providence, Rhode Island.

Dr Klinge showed Emily her tethered cord was easily visible on MRI, and other doctors missed it or simply didn’t look. Due to the pressure from a lumbar herniation caused by the tethered cord syndrome, Dr. Klinge decided that Emily was a candidate for a joint tethered cord release from Dr. Klinge and lumbar discectomy from colleague Dr. Sullivan in November 2023. The surgeries went well, and so far Emily has not retethered (if she does, which can happen to patients, she will need to return for a second tethered cord release). Emily continues to suffer lumbar damage. Unfortunately due to delayed care, Emily suffers permanent lower body muscle and nerve damage typically seen in patients aged 60-70 years old.

In 2024 on advice from Dr. Klinge, Emily established with EDS/MECFS New York neurosurgeon Dr Bolognese and the EDS Chiari Center at Mount Sinai South Nassau at/near Oceanside, NY, to begin assessing and treating Emily’s upper spine and brain issues.

Dr Bolognese and his specialist team have confirmed and began treating the following diagnoses: multiple herniated cervical discs causing cervical stenosis, bone spurs, nerve damage in her neck, degenerative disc disease and multiple craniocervical instability (CCI research and info here and here), AAI, AAO, intracranial hypertension (causing decreased cerebral spinal fluid to her brain, cerebral spinal fluid leaks, adrenal insufficiency, chronic growth hormone deficiency, pituitary gland damage, brainstem compression, and cerebellar tonsil strain causing Chiari-Malformation symptoms), STING (a bilateral styloid issue causing more veinous congestion requiring surgical treatment), neurogenic bladder, severe nerve and muscle atrophy in her lower body.

Emily was able to sit upright for the first time since 2019 on commercial flights to make her first trip to Mount Sinai in June 2024. This fundraiser covered full costs, and Mount Sinai gave her 90% financial aid so she was able to return in October 2024. Emily returned again in February and June 2025 for more surgeries and care. Mount Sinai gave her 100% financial aid for 2025. A new state law is trying to limit financial aid only for patients who live in New York, so Emily was special case approved, and may not get so lucky in future years.

Mercy Medical Flights covered Emily’s trips in October 2024, February 2025 and June 2025. We hope they can cover the more flights to New York in 2025 and 2026. Emily has to reapply every time, and if there isn’t a donor able to buy the flights then it can’t happen.

In additional to spinal issues presenting clotting risks, Emily experienced MCAS-induced Vaccine-Induced Immune Thrombotic Thrombocytopenia (VITT), MCAS-induced immunothrombosis, a clotting disorder called Antiphospholipid Syndrome, a pulmonary embolism in February 2022, and severe microclots likely accrued from MECFS since childhood that worsened after Moderna Covid vaccines and a Covid infection made Emily develop Long Covid. More on Covid causing severe microclots here. More on microclots below.

She successfully treated her severe microclots into remission between June 2023 and February 2024, but they can reoccur, and she may need to return to paying for out-of-pocket specialist testing and increased anticoagulant care should symptoms escalate again.

According to 10 years of Emily's CO2 levels in her bloodwork, she is likely experiencing hypocapnia like many patients with these conditions. The brain blood and oxygen rates in patients with POTS and MECFS drop an average of 20 percent lower than normal while sitting or standing than people without these conditions (more on that here and here).

In 2024/2025, Emily was one of many patients who chose to buy a Lumia Health tracker and app access (out of her SSDI, not this fundraiser). Lumia is first commercial product on the market that lets patients with POTS and MECFS track and monitor these brain blood flow issues in real time. Having real-time data to show to clinicians and others is vital in helping communicate and respond to how frequently and severely Emily’s daily life is impacted by these conditions.

Hypocapnia on top plus these spinal issues inflaming her brainstem means her body needs extra support to distribute oxygen properly. The problem is that oxygen isn't getting where it needs to be properly, in the amounts it should be. Emily has been buying handheld oxygen canisters out-out-pocket her MECFS specialist Dr Ruby Tam recommended that help. As more neurosurgeries are complete, it will be safer for Emily to try get and use a home oxygen concentrator to help her try to sleep better.

She has seen some sleep improvements through dystonia medication, neurosurgeries, her secondary POTS medication, mast cell stabilizers, HRT and MECFS chronic infection medication treatments in 2023-2024. A lot goes into sleep. Endocrinology and pituitary care will hopefully help with sleep more too.

She has yet to find a local sleep doctor or neurologist after several years who will learn about these conditions causing decades severe sleep disorders from oxidative stress, veinous congestion and brain damage — so a CIPAP or BIPAP is currently not an option, despite Emily having both nonobstructive and obstructive sleep apnea as qualifying sleep diagnoses and sleep test data confirming issues.

After 1.5 years on Xarelto after a February 2022 pulmonary embolism, Emily’s severe microclots labs still found microclots rating 3.5 out of 4. All humans have microclots, and most people have Level 1 or 2 microclots. Without treating these severe microclots to bring them down to a safe level, Emily could’ve have a stroke, heart attack, DVT or a second pulmonary embolism.

This required out-of-pocket specialty Triple Anticoagulant Therapy from a remote Long Covid clinic. Emily paid about $2,500 for 3 severe microclot labs and multiple follow up appointments, medication copays and out-of-pocket supplements. Emily was discharged when she reached Level 2 microclots in testing results in early 2024.

Emily’s labs continue to show chronic anemia and liver blood problems requiring ongoing hematology and heptalogy care. Emily’s annual ultrasounds and scans in 2025 confirm ongoing venous reflux issues in her legs, but she is currently clear of major clots. She must stay on daily Eliquis plus out-of-pocket expensive mast cell stabilizers and prescribed supplements to prevent and treat clot and microclot risks.

Microclots grading stages:

Evidence of stage 3.5 microclots in Emily found in June 2023:

More info on diagnoses:

Emily had tethered cord syndrome that was neglected by medical providers since her birth, which progressively worsened over decades to cause scoliosis (diagnosed since age 12 but untreated), a lumbar herniation (suspected since age 26, diagnosed age 29), and multiple herniated cervical discs causing cervical stenosis, bone spurs, nerve damage in her neck and multiple craniocervical instability diagnoses (suspected since age 25, first diagnosed ages 28 and 29, surgically unfixed and left to worsen). Plus causing and worsening intracranial hypertension leading to decreased cerebral spinal fluid to her brain and reoccurring cerebral spinal fluid leaks via dural blebs bursting to alleviate head pressure; resulting damage to the pituitary gland in her brain; and bilateral STING (styloid induced neuropathy of the glossopharygneal nerve) — all diagnosed age 34 finally.

Dozens of specialists in Nebraska, Georgia and Iowa either lacked the knowledge or desire to investigate Emily for tethered cord syndrome even after Emily began to lose the ability to walk and need to use transit chairs, then wheelchairs then a powerchair.

Emily needed a two-in-one lower spinal surgery with two stacked incisions in November 2023 in Rhode Island. She had 2 head surgery tests in June 2024 in New York, an intracranial hypertension pressure test (ICP) and an intracranial traction test (ICT). She returned to New York in February 2025 for a second ICP surgery test and the right styloidectomy surgery for STING. She’ll need to return to New York for her third ICP surgery test and the left styloidectomy surgery for STING in summer 2025. Then the EDS Chiari test will tell Emily whether, between her ICP surgery test results and her in-clinic ICT with home ICT brace wearing and analysis, if Emily is eligible for a cervical fusion surgery for craniocervical instability and/or a decompression surgery for intracranial hypertension. Even if Emily is lucky enough to be get or approved for any of these surgeries, these are chronic issues that may continue to cause severe symptoms, and some issues may reoccur or warrant future surgical maintenance care. These are not cures, just bandaids.

In brief, how tethered cord syndrome presented in Emily is that her filum was too thick and attached itself to her sacral spine, causing tremendous neuroinflammation that progressively destabilized every region of her spine. Tethered cord can be caught and fixed as early as two to four months old. When not caught, tethered cord worsens late in childhood and before/during puberty (which is an immune event), which is why surgeons recommend surgically fixing it before, during or after puberty to avoid escalating damage permanent by adulthood.

These spinal issues developed because Emily was born with hypermobile Ehlers Danlos Syndrome (hEDS), a connective tissue disorder that she was finally diagnosed with in 2017 that makes her body vulnerable. The only common type of EDS is hEDS, at an updated population prevalence of 1 in 500. It's the only EDS type clinically diagnosed as it lacks a known genetic indicator. Mayo Rochester diagnosed Emily with hEDS, and an Atlanta-area biogeneticist specializing in EDS and Mitochondrial Diseases and Dysfunctions confirmed Emily's hEDS diagnosis.

EDS causes Postural Orthostatic Tachycardia Syndrome (POTS) and Mast Cell Activation Syndrome (MCAS), which have been severe for Emily since her childhood and diagnosed respectively at ages 24 and 27 but weren’t properly treated until age 29. Emily has multiple types of POTS, with Secondary and Neuropathic since a young child and then Hyperadrenergic at age 22 after an Epstein Barr Virus infection. She has severe hypovolemia from POTS and her cerebral spinal fluid issues worsened this necessitating home infusion care.

Her MCAS increasingly became more severe due to various infections and other triggers, and nearly killed her multiple times when left untreated until 29. She was admitted into Palliative Care at age 29, and with appropriate MCAS care she was able to return from near-fatal status by late 2020. However, MCAS going undiagnosed and untreated so long played a pivotal role in corroding tissue and further damaging Emily's spine and organs. MCAS was estimated at 1 in 6 people before Covid, and more common since the Covid pandemic began causing/worsening MCAS globally. Every infection worsens Emily’s health and life.

She also developed Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (MECFS) as a young child and then Mitochondrial Disease/Dysfunction as a young adult, two developmental genetic disabilities brought on by multiple immune events (including but not limited to viral infections and viral persistence).

She also finally found a neurologist who assessed and diagnosed her with dystonia, a neuromuscular/movement disorder similar to MS and Parkinson's. All three present in EDS, but the majority of people with EDS are estimated to have dystonia. Having a neuromuscular disorder is very difficult with spinal damage. Since age 19, multiple people witnessed Emily had full-body and focal seizures plus waking and sleep seizures and tremors. She was likely also born with considering clinical symptoms stretching back from childhood. Most EDS patients are born with or develop neurosurgical and neuromuscular disorders as EDS is a connective tissue disorder, so Emily’s body lacks proper connective tissue structures to sustain muscle-skeletal systems. She is on a Parkinson’s medication used to treat dystonia which helps her muscles manage eating, digestion, mobility and other daily basic muscle impacts.

This cluster of disabilities and many comorbidities Emily also has are permanent and have caused significant damage. Immune events flare mast cells which cause connective tissue damage throughout the body, which is particularly devastating in people with EDS and other connective tissue disorders.

Some doctors have refused care for Emily just because she has EDS, and this diagnostic discrimination interrupted and prevented critical care over the years. Other doctors suggested Emily was faking having these symptoms and conditions, despite specialist diagnoses and even confirming diagnoses from two or three or four other specialists. Also, despite fantastic mental health providers affirming these were biophysical issues and that Emily wasn’t faking seizures, collapses, blackouts, vomiting and other issues. Some doctors forced her to take psych medications that worsened these conditions significantly due to prescription interactions and condition interactions.

She was even forced into a psych ward when she was unable to walk and experiencing severe symptoms, where she was abused severely and denied medical care. A friend had to discharge her and take her to the ER again. This “clinician associated trauma” EDS patients endure is sadly common, and this clinical damage setback Emily’s care and endangered her life multiple times for years.

As a result of these spinal issues, Emily had developed dozens of neuromuscular, seizure, neurological and other diagnoses limiting her ability to work, continue a higher education, drive, exercise, run, walk or sit up or stand for long periods, and even daily activities like eating meals, showering and household chores. Emily has had to rest at home in bed for most of the day, every day for 6 years. She has been in Palliative Care since age 28.

Even with neurosurgeries, Emily will have lingering permanent damage because she wasn’t taken seriously by medical providers, school personnel and other adults who didn’t get her the care she needed as a child, teen or young adult. Emily may need to repeat these surgeries throughout her life. She needs all of the support she can get now. Left untreated, these issues could kill Emily. She is very grateful for the support and care she has received so far that kept her alive and able to help others with these conditions!

More about Emily:

Emily often educates doctors, researchers and government agencies on these conditions, given her background in medical research and medical journalism plus her patient expertise. She's been sourced by peers in these fields as an expert. She has been consulted by national and local writers and journalists for edits on disability and chronic illness stories, scientific and medical misinformation, disability editing style guides and disability culture guidelines, accessible disability design issues and more.

In early 2023, Emily's service animal passed away after getting Covid following another infection. It has been a very hard life for her, but that hasn't stopped her from helping others.

Emily has fundraised care costs, housing, food and other expenses for countless disabled and chronically ill people for several years on Disability Twitter, Instagram, Facebook and Mastadon. She is a moderator of Disabled Social on Mastadon, a social media server by disabled people for disabled people. She helps with many medical research projects and consults with patients who suspect or are diagnosed with these conditions (some of whom are directed to Emily by doctors, as they say Emily knows so much at this point that she basically has a medical degree). Emily advocates for funding for more research and government approved treatments on a weekly if not daily basis, working with patients, providers and researchers. Everyone deserves a good quality of life!