Voices Across America

My Patient Story

Savannah

State: Texas
Congressional District:

Diseases

Neurological Disease, Rare Disease

Issues and Challenges

Savannah has encountered: Rare / Underserved Disease, Disability, Invisible Illness

My Story

Devic’s disease is a neurological disease of the brain and spinal cord dominated by inflammation of the optic nerve (optic neuritis) and inflammation of the spinal cord (myelitis). It’s often mistaken for MS because both diseases have similar symptoms. I suffer from a relapsing form of the disease, which means a patient can go through multiple attacks which accumulate disability over time. I was diagnosed in 2019 and I was put on a preventative chemotherapy treatment called Soliris after they found 3 brain lesions and my optic nerve was inflamed.

In Devic’s disease, the attack results in inflammation and damage to the nerve fibers, disrupting nerve cell communication. Patients who endure this disease suffer from blindness, paralysis, and life-threatening complications.

In the beginning of my diagnosis, it shattered every kind of normalcy I had and I went half-blind and still am to this day. Being the independent woman that I am, battling this crippling disease was extremely humbling, and I had to finally accept help from others.

I’m a public special education teacher and in my second year of teaching I had to quit, 3 months after my diagnosis. I felt like I had failed so many people in my life; my husband, my students and co-workers. I could no longer do what was so easy for me like washing the dishes, cooking, and waking up in the morning to dress myself. I was shattered--the superwoman part of me was no longer alive.

My disease intended I would lose all hope, and in my despair would never be able to jog with my full strength again, or get out of a hot bath on my own, or get out of bed without burning feet, or never see a day where I wasn’t throwing up in pain. But I have seen all of those things through today, and though I live with chronic-pain, I know I’m a stronger woman for it. Sometimes tough situations build strong people; strong women.

Fast forward to now, two years later after living with my diagnosis, I am working again with special needs students as a public school teacher and I survived teaching through the COVID-19 pandemic! Every morning that I wake-up and enter my classroom, I feel a sense of accomplishment. I sip my coffee, looking around my room with the feeling that I made it again. I chose to do what I love, despite my daily health challenges and biweekly treatment. I chose to go through my life not allowing pain to dictate how I live. I’d rather live a painful life than not live one at all.

Living with a rare disease like mine is lonely, yes. I fight for my health every day. People may think I’m lazy or dramatic. People will give their homeopathic advice, but an 'arnica mountain daisy' isn’t going to cure my crippling disease. People have made me feel the most lonely I’ve ever felt in my life. But here I am—living despite the battle of not only my disease but of people that don’t understand what I’m going through.

I’ve learned that it doesn’t matter how bad the pain we are feeling is, either physical or mental, as long as we can still feel the love of those that love us, we will survive that pain, over and over again.

"Alone we are rare, together we are strong."

My Motivation and Inspiration

My students to keep doing what I love as a special ed teacher and my family.

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