We've got your back! Help Emily get spinal care

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Hello everyone!

This fundraiser is to help Emily Johnson get serious neurosurgery care costs and severe microclot treatment. Her work in journalism, medical research, social media, public relations and editing was cut short due to lack of care. She has had a few great work opportunities offered to her, but without this care she can't get to a better baseline to sustain full-time or part-time work. She is now 34 years old and finally able to access care for many long-standing health issues, but she needs our help to afford it!

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 have not had the expertise or willingness to properly assess, diagnose and treat her. Emily’s neurosurgical, neurologic, urologic, neuropsychological, plastic surgery and ENT 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.

The plan:

Emily knew since 2017 she likely had tethered cord syndrome, left undiagnosed and untreated since birth. Thanks to the help of few loved ones who helped her get there in 2023, she was finally able to establish care with one of the few US neurosurgeons in tethered cord, Dr Klinge at Brown University in Providence, Rhode Island. Dr Klinge is the global tethered cord expert. She showed Emily her tethered cord was easily visible on MRI, but other doctors missed it.

Due to the pressure from a lumbar herniation caused by the untreated tethered cord syndrome, Dr. Klinge decided that Emily is unlikely to find benefit from only a tethered cord release. Emily got a joint tethered cord release from Dr. Klinge and lumbar discectomy from colleague Dr. Sullivan. Unfortunately due to such delayed care, Emily suffers permanent lower body muscle and nerve damage.

After recovery, Emily followed up with New York neurosurgeon Dr Bolognese. So far, Dr Bolognese and his specialist team diagnosed Emily with 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) diagnoses, intracranial hypertension causing decreased cerebral spinal fluid to her brain and cerebral spinal fluid leaks, STING which is a bilateral styloid issue causing further veinous congestion.

After lower body surgeries healed, Emily was finally able to sit upright for the first time since 2019 on commercial flights for medical care. Mercy Medical Flights covered Emily’s first New York surgery trip in February 2025, and we hope they can cover the 1-2 more flights back to New York in 2025 to continue surgeries and treatments. However, no orgs will cover lodging, car rental, gas or food costs so we need donations for this.

Updated 2025 fundraising goals:

1) Medical care for EDS Chiari Center specialist team treating Emily for the above neurosurgical issues and shortterm and longterm consequences of these long-dismisses unfixed issues:

2) Almost $700, currently covered, for a special order home traction Aspen collar with an attached brace Emily has to wear for craniocervical instability traction testing at home, to determine eligibility for a cervical fusion. If Emily can get a fusion and/or decompression, she will have to wear this brace extensively every day for 3 or more months during recovery.

3) Up to $2,000, currently covered - In additional to the four 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 , and severe microclots likely accrued from MECFS and worsened by Covid vaccines and a Covid infection which 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 again in the future should symptoms escalate again.

4) $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. According to 10 years of Emily's CO2 levels in her bloodwork, she is likely experiencing hypocapnia like many patients. Her brain blood and oxygen rate drop an average of 20 percent lower than normal while sitting or standing (more on that here and here).

Hypocapnia on top plus these spinal issues inflaming her brainstem means her body needs extra support to distribute oxygen properly. The problem is not that she's not getting enough oxygen, the problem is that oxygen isn't getting where it needs to be properly.

Emily has been buying handheld oxygen canisters out-out-pocket her MECFS specialist recommended that help. After neurosurgeries are complete, it will be safer for Emily to finally approach the possibility of getting a home oxygen concentrator to help her overnight.

She has yet to find a local sleep doctor who will learn about her conditions causing severe sleep disorders from oxidative stress so a CIPAP or BIPAP is currently unfortunately not an option despite Emily having qualifying sleep conditions.

Severe microclot info:

After 1.5 years of taking Xarelto after she had a pulmonary embolism, Emily was still found to have severe microclots rating 3.5 out of 4. Most people have Level 1 or 2 microclots. Without treating the severe microclots to bring them to a safer Level 2, Emily could have a stroke, heart attack, DVT or a second pulmonary embolism which could kill her.

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

Microclots grading stages:

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

We would appreciate it so much if you could help Emily pay for these expensive and life-saving surgeries and treatment.

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 took Emily months to help create this fundraiser due to severe neuroinflammation, she 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!

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 but left surgically unfixed), 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.

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.

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 upright for very long, 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 29.

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!