It started at four
Estela Lugo was four years old when she was diagnosed with CMT. Her younger sister Melissa was diagnosed at two. They share GDAP1 CMT4A, a recessive form caused by a mutation that had never appeared in their family before. Both of their parents are carriers.
She grew up on Long Island in a family already deep in the CMT and muscular dystrophy world, raising awareness and funds long before it was her turn to carry the work forward. She is quick to say the hard parts were only one side of the story.
I had a great childhood, a really great childhood, aside from my challenges.
Estela Lugo
A designer first
Estela was always drawing, and she turned that into a career. She graduated from Manhattan's Fashion Institute of Technology in 2001 and built a business designing furniture and wall decor. In 2008 she was named one of Oprah's Women Who Make Beautiful Things in O Home Magazine, and her company, ONE Decor, reached national retail. Her sister Melissa worked alongside her before starting her own pastry business.
Finding the community
For a long time, CMT felt like something only she and her sister carried. That changed when she found the Hereditary Neuropathy Foundation and the documentary Bernadette, and emailed HNF's founder, Allison Moore. She went to an HNF forum in Manhattan, and everything shifted.
I became aware of a larger community of people with CMT and wanted to be a part of that. Until then it was just me and my sister.
Estela Lugo
She started as a moderator for HNF's CMT Connect workshops and is now the foundation's Program Development Manager, connecting patients with the wellness resources that help them live better. For someone raised in CMT advocacy, the work means something.
This is a full-circle moment. I am back where it all began.
Estela Lugo
Movement is medicine
On a typical day, Estela puts her hand and leg strength at about half of a healthy person's, and she meets that head on. Nine in the morning is stretch and yoga time, every day. She works with physical therapy and weights, and she has become an adaptive-fitness activist who credits the AlterG anti-gravity treadmill with letting her run for the first time in her adult life.
Yoga is the best thing I have ever done for my CMT.
Estela Lugo
Her approach to health is deliberately broad. As she puts it, health is a multi-faceted approach for CMT, and she is constantly looking for ways to improve quality of life on more than one front.
Turning pain into purpose
Estela has become one of the clearest voices in the CMT community. She co-hosts the emBRACE It podcast, honest and funny conversations about living boldly with disability. She helped create HNF's ABCs of CMT Pain Management guide. And on a TEDx stage, wearing her decorated ankle-foot braces, she gave a talk called RePurpose Your Pain, about turning your wounds into life's beautiful work.
Her two children do not have CMT. The recessive mutation that shaped so much of her life stopped with her and her sister, and Estela now spends her days making sure the next person who hears the diagnosis does not have to feel like it is just them.
