Image of man and woman accompanied by the text: "Deanna. @resilience.is.beautiful, current location: East Tennessee, profession: rare disease advocate, speaker, and member of the Rare Advocacy Movement."

Parachute Portraits: A Conversation with Deanna Steinle

Warm, optimistic, and brilliant, Deanna Steinle is a speaker and mentor who has leveraged her platform to help other individuals diagnosed with rare diseases.

July 01, 2021

Q

Tell us about your health journey

A

I was first diagnosed with generalized myasthenia gravis (gMG) in April 2017, when certain neuromuscular symptoms presented themselves in a way that allowed me to finally get the correct testing and answers that I needed. Unfortunately, that meant I had become weaker and sicker than I was even aware of. Although my diagnosis helped define and give a name to what was happening to my body, I had no understanding of how my life would dramatically change.

Because gMG is a rare, fluctuating, and progressive autoimmune illness that presents differently with each patient, my treatment plan is tailored to me. Each patient also responds differently, so it has taken several years to find the right balance of treatments to help me. My day-to-day varies by the hour and sometimes even by the minute. My current treatment plan is as follows: I take oral disease suppression medication multiple times a day, additional medications to combat side effects, I wear an ice vest, and I receive immunoglobulin infusions (IVIG) every 5-6 weeks. As part of my care team, I’m fortunate to have a loving medical service K9,  Stormi, who alerts me when I need to take medication.

Image of woman in a hospital with a dog in her lap

Describe yourself in three words

A

Resilient, perceptive, life-loving

Q

How has access to plasma-derived treatments helped you?

A

IVIG has saved me. Is it a cure? No. However, for the first time in years, I just completed my first year of not being admitted into the hospital. IVIG keeps me from being in danger every minute of every day. I still experience episodes and difficulty breathing, regardless of the infusions, but I am stronger and able to spend time with my loved ones. I can’t put a price tag on the time we have together.

Image of woman running on beach with a dog.

"IVIG has saved me. Is it a cure? No. However, for the first time in years, I just completed my first year of not being admitted into the hospital. IVIG keeps me from being in danger every minute of every day."

Q

What do you wish your friends and family knew about living with gMG?

A

I wish people knew that what you read online is so far from the reality of living with this illness. The outcomes, the predictability, and the treatments are all individualized, and no two cases are the same. That’s why it is often referred to as the “snowflake disease.” While our diagnoses are the same, our symptoms, testing, treatment protocol, degree of progression, and outcomes are all different. Stop Googling the symptoms and start listening to what the individual living with gMG has to say.

Q

Where are you finding comfort these days?

A

I find comfort in community, specifically by helping others, speaking, and mentoring.

Q

What's one thing (or few things) you're grateful for?

A

I am grateful for my family, friends, care team, plasma donors, and Stormi.

Image of man and woman smiling in front of a Christmas tree

Q

What have you learned about yourself this past year?

A

I learned that my story and lived experience have value. I'm the champion of my journey and protector of my life. 

Q

Favorite thing you're reading or watching right now? 

A

I’m currently satisfying my wanderlust with a lot of travel and food-related YouTube channels. Strictly Dumpling is a personal favorite.

Q

Words to live by:

A

My motto and personal brand is “Resilience is Beautiful.”

Q

What organizations and causes are you passionate about?

A

Two organizations that are close to my heart are The Myasthenia Gravis Foundation of America (MGFA) and St. Jude Children’s Research Hospital