Treatment for Kylie

As you may know, Kylie was diagnosed with the rare disease CRPS when she was 15. She finally found a treatment that worked, but insurance suddenly stopped covering it. Each treatment costs $1100 now.

Kylie is a kind person known to many as “Sunshine”. She is passionate about improving the lives of others in both her personal life and career aspirations. She is a social worker who works hard to improve and change the lives of others in the homeless, mentally ill, and other populations.

CRPS is the most painful condition known to the world. Kylie has tried many different treatments in the past with little effect. These treatments allow Kylie to participate in more life activities and experiences and have fewer days planned around her pain. She can work normal hours when she can receive regular treatments.

We have appealed to the insurance company, but they have deemed the treatment experimental despite the positive feedback and results from Kylie’s treatment physician’s practice. Kylie used to get treatment every month and depended on them to function. Her physicians submit data on the effectiveness of the treatments on the condition to the FDA in hopes of overturning this decision.

Kylie’s CRPS isn’t curable, but these treatments improve her quality of life. Our goal is to raise $15,000 to pay for treatments in 2023 and 2024.

About CRPS:

Complex Regional Pain Syndrome is a rare chronic pain condition that’s caused by trauma to a limb or body region or a direct nerve injury. CRPS is a whole-body disease involving the central and peripheral nervous systems. Due to the rarity of the disease, getting a diagnosis can be hard and may take multiple doctor visits. Some signs and symptoms of CRPS include,

• Continuous burning or throbbing pain in a limb or area.

• Changes in skin color, temperature, sweat rate, hair, and nail growth rate in the limb.

• Sensitivity to touch or temperature.

• Muscle tremors, spasms, or loss of muscle tone (atrophy).

• Loss of function or mobility of the limb.

CRPS has been described by some physicians as “physical PTSD”. The body does not recover from the initial injury and has a continued, prolonged, and exaggerated pain response that is the hallmark symptom of CRPS. Any injury from stubbing your toe and fracturing it, to a scratch on the arm could be the initial injury. A positive feedback loop of pain signaling is then set in motion and over time, pain sensitivity increases via a process called central sensitization.

Treatment approaches to CRPS include pain relievers, anti-convulsants, Dorsal Root Ganglion (DRG) implants, peripheral nerve block injections, and intravenous infusions. Kylie has a DRG implant and has tried all these treatments and only found significant lasting relief with the infusions. In addition, there are no FDA-approved medications in the United States specifically for CRPS, demonstrating the lack of awareness and research on the painful condition.

Being a whole-body disease, CRPS takes a heavy toll on mental, emotional, and social health. CRPS has been nicknamed the “suicide disease” because of the severity of the constant pain. A flare can result in having to cancel plans, call off work, and over time can lead to the loss of friends and relationships. Most CRPS patients have some degree of disability which will progress over time with the disease leading to increased reliance on family and friends for assistance. These add to the emotional and physical stressors on the body, which only increases the likelihood of flares and increases pain sensitivity.

We hope that through this GoFundMe Kylie will be able to receive life-changing treatments throughout the year that allow her to continue functioning as able-bodied as possible. Our second mission is to increase awareness about CRPS and to hopefully fund future research and development of treatments and medications specifically for CRPS.