Thank you for your interest in my cause. My name is Katie Barnett and I live with a complex chronic illness. I fell 50K in debt trying to find out why it felt like my body was failing me.

Until recently, I was working as a firefighter. I was strong, healthy, and loved my career. I was diagnosed with a rare connective tissue disorder called Ehlers Danlos Syndrome. Because of the abundance of connective tissue in our bodies, EDS is complex and chronic. Connective tissue serves important roles like strength and contractility of blood vessels and the digestive tract, as well as strength and function of ligaments and skin. This invisible illness causes chronic symptoms that affect my daily life. The financial burden of my rare illness has lead me to create this page and ask for help. In order to see specialists who treat patients with connective tissue disorders, not only do I need PPO insurance with high out of pocket costs, but I will need to travel to other states for my care.

As I reflect on this past year, it has been bitter sweet. After years of unexplained health problems, I have a diagnosis. In addition to months of specialized physical therapy and chiropractic work, this year alone, I’ve had 26 doctor’s appointments, 15 sets of imaging, and 5 surgeries/ procedures.

This year I found out EDS has affected my blood vessels. I have 2 rare vascular compressions and potentially more. I will be undergoing surgery for Nutcracker Syndrome in 2026 and hope for pain relief. Unfortunately, this is only one source of my chronic pain.

To date these my diagnosis:

May Thurner syndrome (vascular compression)

Nutcracker syndrome (vascular compression)

Peripheral neuropathy

Delayed gastric emptying (slowed digestion)

Cervical instability (ligaments in my neck don’t hold the vertebrae in place)

Ankle instability

Torn labrum (shoulder)

(these are in addition to all around joint laxity/instability)

2026 will be a big year for me. More diagnostics and surgery. Because EDS is so rare, the specialists that understand it are few and far between. I’m on a waitlist for a Neurosurgeon in New York, and will most likely have Nutcracker surgery in Utah.

I thank you for taking the time to read my story and I look forward to 2026!