This “Community Spotlight” series highlights and celebrates our unique and wonderful NM community members. The Q&A will give a peek into the lives of individuals living with NM and the diversity they represent.

Lucinda Lee

Country of Origin: United States
Birth Year: 1997
Gene Subtype: NEB

Mechanical ventilation, cough assist, suction machine, nebulizer and SOT

Wheelchair outside of the house

Modified oral diet and nutritional supplements

What are your greatest challenges?

Staying healthy, maintaining physical function, breathing, finding accessible wheelchair van parking and overcoming anxiety.

What accomplishments are you most proud of?

Attending university, maintaining a 4.0 GPA and early entry into graduate studies. Surviving a deadly medical mismanagement in a hospital. Design work I have done for several nonprofit organizations

At what age were you diagnosed and what led to this diagnosis?

I was floppy with no ability to suck and swallow properly from birth, but was misdiagnosed until age 5 when a muscle biopsy confirmed nemaline rods in my muscle fibers. By that time, many additional clinical features of NM were also apparent.

What tips or hacks do you have for making life easier?

  • A fully adjustable electronic bed allows me to sit up and get out of bed on my own
  • A 3 to 4 tiered media cart with built-in outlets as a “bedside table” for medical equipment and supplies
  • For anyone with career aspirations, look into programs in your area, like Vocational Rehabilitation, to help you achieve your occupational goals.

What life improvements could be realized if you had a successful medical treatment for Nemaline Myopathy?

To be able to breathe on my own all the time, walk wherever I want and be independent in taking care of myself. To travel wherever I want, ride a bike, go hiking, have more career options, and not have to live in fear of getting sick because I may not survive the next illness, to name just a few!

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