Alexandra Gresick isn’t letting Nemaline Myopathy (NM) define her. The 35-year-old St. Louis resident wears many hats – a university employee passionate about student success, a culture and language enthusiast, and a determined individual navigating a rare disease. Her journey with NM began with a dramatic turn.

A Diagnosis and a New Chapter

“Hospitalization for right sided heart failure at 17 years old caused by respiratory insufficiency,” Alexandra recalls. “A very observant ICU doctor noticed I had the characteristics of NM and ordered a muscle biopsy which confirmed NM.”

The diagnosis, while a relief after years of unexplained symptoms, brought its own set of worries. “While I was relieved to finally have a diagnosis and answer to the symptoms I had experienced nearly my whole life, I was still concerned about how rare NM is and what information was available,” Alexandra says.

Living with NM: Breathing Challenges

Living with NEB type NM presents challenges, but Alexandra’s spirit remains undimmed. “I want people to know that I strive for success in all that I do and will continue to excel. I am more than my diagnosis and symptoms,” she declares.

These challenges are most evident in her every breath. “NM affects my daily life the most in my breathing. Having a weak diaphragm muscle causes me to have respiratory insufficiency and elevated CO2 levels which requires use of a non-invasive ventilator (mostly at night time),” Alexandra explains.

Beyond the Diagnosis: A Life Filled with Passion

Despite the limitations, NM has instilled a deep appreciation for life’s simple joys. “Living with NM has made me appreciate life and not take things for granted,” she reflects.

However, self-doubt can creep in. “Other than encountering more difficulty than others with breathing, walking, and other strenuous activities, my biggest challenge is my self-esteem and self-confidence. It is hard being 35 years old living with a rare disease that causes muscle weakness,” Alexandra shares.

Staying Active and Engaged

But Alexandra finds comfort in the pursuit of her many interests. “I work at a university and am passionate about supporting student success. I am also intrigued by learning about different cultures and languages,” she says. Her creativity shines through her many talents – writing, editing, designing, and crafting stories through words and images.

So how does she stay active? “I recently completed an outpatient cardiopulmonary rehab program. I have now signed up for an optional maintenance program in the same setting and have a goal of exercising two days a week in that program and then completing more exercises at home outside of the program,” Alexandra explains, demonstrating her commitment to staying healthy.

Finding Strength in Community

Finding a community within A Foundation Building Strength has been a source of strength. “AFBS has been outstanding. It was wonderful to participate in the webinars and learn firsthand from the scientists about exciting upcoming natural history studies that will be taking place,” she says. She also participates in monthly virtual meet ups that provide a safe space to connect with others facing similar challenges and help keep her from feeling isolated.

Hope for the Future: A Dream of a Cure

“I hope there can be a cure for NM someday, or at least a heavy-duty treatment infusion of some sort that would reverse the effects on the muscles,” Alexandra expresses.

A cure would mean a life with fewer limitations. “I could live better by breathing easier without having to use a machine. It would also mean doing everyday activities like walking, running, cooking, and lifting things without hardship,” she envisions.

Resilience and Living a Fulfilling Life

Alexandra’s story is a testament to resilience. “Since being diagnosed at 17 years old, I have graduated high school, graduated with a bachelor’s degree, and graduated with a master’s degree. Self-actualization and success are possible in anything and everything!” she declares. Alexandra Gresick is living proof that even when you have to overcome great challenges, you can still live a life filled with purpose and passion.


  1. 1
    Diane Goodwin on May 30, 2024

    Alexandra, Thank you for sharing your inspiring story!

  2. 2
    Elena on June 1, 2024

    This is a great article!
    But it only scratches the surface of Alex’s strength and perseverance. NM does not define her. She is defined by her bravery, compassion, empathy, creativity, and love. Her artistic prowess is inspiring and her generosity is unparalleled. Despite enduring more difficulty with daily tasks than others, she lives with steadfast joy. Her positive outlook and smile are contagious.
    Alex, I love you and am sound proud of you! I hope this story inspires others to live fearlessly like you!
    Your Little Sister

Leave a Reply

Your email address will not be published. Required fields are marked *