STRENGTHENING the global effort to CURE neuromuscular disease

Between the ages of 13 and 14, everyone’s bodies change. But for Kae Tran, this stage of life also meant she started experiencing mild symptoms of muscular dystrophy. After underestimating these symptoms for years, she was officially diagnosed with muscular dystrophy at age 17.

Muscular dystrophy (MD) is a group of muscle diseases that cause the skeletal muscles to become weaker. Other forms of muscular dystrophy also affect involuntary muscles, including the heart. Symptoms vary depending on the disease and its severity.

“At first I didn’t fully understand it and what it meant for me long term,” she said reflecting on the early years after her diagnosis. “I was young and although I was experiencing symptoms, it was easy to not take the diagnosis seriously since I was still relatively mobile and the deterioration was so slow and gradual.”

As with many MD patients, Kae says she mostly ignored her symptoms and rather, “adapted as the disease progressed.” However, she says MD has impacted her pretty much everything from her independence and confidence to mental health and day-to-day living, so she is glad she came around to educating herself about what was happening to her body. Since then, she has become a massive advocate for those with MD, in addition to her career as a creative. 

“Looking back, I wish I had embraced it and done more research, but times were different then,” she says, now, at age 30. “There weren't as many resources and support as there is today, [and] maybe the ignorance allowed me to push through and move forward to live a ‘normal’ life.” 

For Kae, ‘normal’ means focusing her energy as a freelance creative designer, where she creates stunning campaigns for companies including Red Bull, Tabasco, Coors Light, and more. In her free time, she is also tremendously active as a yogi, fashionista, and photographer. 

“Today, I am fully embracing my situation and educating others about it,” she says. “There is less to fear when you are more informed.” 

As for care, Kae sees her neuromuscular specialist once a year to do a general check in, as well as occasional meetings for strength testing. She has also recently started seeing a massage therapist, who comes to her home every 2-3 weeks to relieve the tension in her body. 

Other than that, Kae says her course of treatment mainly lies in wellness through practices like stretching, meditation, strength training, journaling, and eating a nutritious diet. Lucky for Kae, she enjoys most of these things, and believes they have contributed to her general happiness in addition to symptom management. 

“In the past, I’ve seen many different medical professionals and most of them were unable to help due to not knowing much about MD, and the hard truth that there really isn’t much you can do to treat MD,” she said. Thus, she only sees her neuromuscular specialist regularly. 

Kae thinks the biggest misconception folks have about MD is that there is a one-size-fits-all solution. In actuality, she says, everyone is different and has different needs and abilities, reiterating the importance of continued research into the disease. 

“We can’t keep putting people into boxes,” she says. “We need to think bigger and have more hope, and I think we also need to emphasize the importance of how lifestyle affects our health and how we can take control back through mindful daily choices that will empower us.”

“There might not be a cure, but we can still live a quality life in our own ways.” 

Keep the Hope - Make a Donation

With your help, the AANEM Foundation can fund research to help improve the lives of patients with neuromuscular diseases. Together we can support the researchers who are finding the treatments and cures for tomorrow. Help the next generation of researchers and donate today.