Stephanie's Path to Healing and Hope

UPDATE: Not good news

Thank you to all who have shared, prayed or donated! Unfortunately, Stephanie was hit by a drunk driver and her car was totalled. She is okay, but now she has almost $10,000 of medical bills *on top* of her regular expenses. After insurance she owes $7000 for the hospital after the accident and close to $2000 for the ambulance ride there. Plus, she no longer has a car and the insurance payout is very low (older automobile).

She has applied for financial assistance at the hospital but has been initially denied. She will keep trying!

Any help with these emergent medical bills would be so helpful and allow Stephanie to continue rehabilitation for EDS and CRPS.

Also, keep your eyes open for a low-mileage used car for cheap! Well wishes and prayers are always welcome and appreciated!

ORIGINAL POST:

I’m writing to all of you about my friend, Stephanie, remarkable woman who has been battling multiple complex chronic health conditions and is unable to work. Stephanie was in a workplace accident in 2020 - the elevator she was riding in plunged from the 2nd floor - that resulted in serious injuries, including a fractured hip, torn meniscus and a seizure disorder. The injuries from that accident triggered Reflex Sympathetic Dystrophy, also known as Complex Regional Pain Syndrome (CRPS), a condition that results in devastating and chronic pain out of proportion to what is actually going on in her body. All four of her limbs are affected by CRPS.

She also has Ehlers-Danlos Syndrome (EDS), one of a group of inherited disorders of connective tissue (skin, joints and blood vessel walls) that results in stretchy, fragile skin and hyper-flexible joints. EDS also affects vessels in her heart and digestive system, and causes problems with proprioception (the sense of her body position and balance) and dysautonomia - a nervous system disorder that impacts the autonomic nervous system, which controls automatic functions like heart rate and blood pressure. Symptoms include heart palpitations, dizziness, and fainting. 

Her symptoms often are exacerbated by the unrelenting pain from CRPS, where her brain sends pain signals even when there is no identifiable cause. CRPS is often referred to as “the suicide disease”. It is one of the most excruciating pain conditions known with no specific causal mechanism and no cure. Imagine waking up in the morning to your arms and legs feeling as if they are fire. Even seemingly innocuous things cause her pain - a condition called allodynia - and loud sounds and certain textures of fabric can trigger severe pain. Often, this leaves her unable to drive, causes difficulty sleeping and makes daily activities impossible.

Stephanie has been independent most of her life; she got her first job at age 14 and has worked ever since, including while studying and earning Summa Cum Laude upon graduation. She bought her first home in 2015. She had completed a Master’s in Teaching and was working as a special needs teacher at the time of her accident. She led an active lifestyle up until her accident. She was a passionate long distance runner who ran with Team in Training (Knoxville), she traveled throughout Europe and never missed an opportunity to push herself.

Her early focus on her financial stability has helped her get this far in her recovery but her funds have run out. Worker’s Compensation covered some costs but ran out before she was cleared to return to work. There are no cures for EDS or CRPS and her symptoms are not well-controlled by treatment. She pays her medical expenses herself and she now has exhausted her 401K funds just to be able to continue the treatment medically necessary. She has applied for Social Security Disability but has been denied twice. She plans to appeal.

Stephanie sees multiple specialists each month, including physical therapists, pain management doctors, neurologists, and cardiologists.

Last year her out-of-pocket medical costs were $5698.69. In the first 5 weeks of 2025, she has spent $2200 in out of pocket expenses. She pays for her own insurance from the Marketplace in order to be able to receive the treatment she needs, but that often falls short of what doctors recommend. Insurance has denied many of her claims and she has to pay out of pocket for Physical Therapy (98 visits last year).

There are treatments for CRPS that are supposed to relieve and/or help her manage some of the chronic and unrelenting pain. Stephanie’s doctors are proponents of these therapies and offer them here in Knoxville. Unfortunately, these treatments have been deemed “medically unnecessary” by her insurance because either they are still considered “experimental” or that Stephanie and her doctors have been unable to prove they would be of benefit.

Stephanie is determined to fight these conditions and regain her independence. Your donations, no matter the size, will go directly toward covering treatments recommended by Stephanie’s doctors that insurance won’t cover, travel to and from doctor appointments when she is unable to drive, and other expenses associated with her treatments. If you’re unable to contribute financially, please consider sharing Stephanie’s story with others or reaching out to her here with words of encouragement. Every kind word is appreciated!