Help Tom Survive His Chronic Autoimmune Disease

My name is William Thomas Nesbitt, and I'm facing the daunting challenge of living with a rare and incurable autoimmune neuromuscular disease. Generalized Myasthenia Gravis (GMG) has relentlessly taken control of my life leaving me in financial peril and the challenge of performing daily activities.

The Battle with GMG

This relentless disease robbed me of essential functions suddenly in February 2023 after a vaccine shot. Symptoms developed rapidly and advanced over the course of five months. Speaking, swallowing, walking, using my hands for holding objects and typing, holding my head up due to neck muscles failing, and the ability to see clearly without double vision and eyelids collapse progressed without a diagnosis and while seeking help from physicians and specialists at several hospital ERs.

By June 2023, my ability to breathe had become so labored that I was sent by a life-flight helicopter to a trauma hospital, intubated, treated for starvation and heart issues, and finally diagnosed with extreme Generalized Myasthenia Gravis in the ICU.

I was weened off life support by removing and replacing my plasma through a process known as Plasmapheresis. I was finally able to relearn how to speak, walk and eat again, but the treatments only lasts only a short time and my body again develops antibodies which try to kill me. Immunosuppressants are used to hinder these antibodies, and in conjunction with plasmapheresis they keep me alive but put me at risk of developing other diseases and expose me to danger from something as simple as a cold.

GMG leaves me grappling with these debilitating symptoms compromising my ability to work.

Financial Strain

The impact on my livelihood has been devastating. Online remote work and office work are an almost impossible task limited to a mere thirty minutes to an hour a day due to spasms in my fingers, neck, shoulders and arms, eye issues, short term memory issues and persistent brain fog. Any work requiring standing, lifting, or carrying objects is now impossible for more than thirty minutes a day. Driving to and from a worksite can be no longer than a twenty minute trip each way but only during daylight hours if my vision or limb muscles and hands fail.

I find myself unable to support myself through work with these chronic symptoms despite medications, leading to the depletion of my finances.

Denied Disability

Despite the severity of my condition, disability benefits have been repeatedly denied. The rarity of GMG and the belief that medications stabilize us enough to continue basic functions have left me in a dire situation, struggling to survive without income and inability to obtain employment I can perform with my disease as I fight for benefits due me.

Hospitalization and Desperation

I've endured eight hospitalizations over the past year. Without insurance, I'm forced to navigate emergency rooms, hoping to reach them in time to prevent suffocation during a diaphragm muscle crisis. The long hospital stays end with the challenging process of relearning essential tasks like speaking, swallowing, and walking. Each episode comes with a high cost physically, emotionally, and financially.

The Need for Support

The main goal of this campaign is to seek assistance for crucial aspects of my life. I desperately need financial support for medications, with the cost averaging $1300 to $1700 per month. Although the medications I am currently on stabilize my condition to a degree, muscle failure, spasms, and vision issues are a daily occurrence. In addition, these medications suppress my immune system which leaves me vulnerable to everything from bacterial and viral infections to several cancers and broken bones during falls. I have been hospitalized with colon perforations three times due to my immune system unable to fight issues, and I face the removal of my lower large intestine when the perforations happen again.

My hope is for regular Plasmapheresis treatments and infusions which work better than the medications, do not cause additional health issues, and will facilitate my ability to work. The plasma treatments and infusions are cost prohibitive without insurance, ranging between $3000 and $7,000 per treatment, with an average of five treatments needed over a ten day period and performed through ports in major arteries in a hospital setting. Outpatient Plasmapheresis will involve transportation to an infusion center an hour and a half away each week and will take approximately five hours if there are no issues.

Insurance to cover medications and treatments is impossible for me currently with monthly payments quoted between $1200 and $1900 a month through the open market and ACA. I simply can not afford the policies or deductibles.

How You Can Help

Your generous contributions will directly contribute to securing essential medications, plasma treatments, appropriate insurance, basic transportation expenses, and maintaining vital communication through phone and Internet as I continue to fight for Disability . By supporting this campaign, you become a lifeline for someone fighting a daily battle against a debilitating and deadly disease.