'I'm a World-Class Pianist Living With a Rare Disease'

According to my parents, at six months old I had a grand mal seizure. I was in my grandmother's arms and I turned blue. After that I started having infantile spasms (IS). My first was at Disneyland during the The Main Street Electrical Parade. My mom saw me making these strange movements and was terrified.

My parents then took me to hospital for an MRI scan, but initially they were told that the MRI was completely normal. Luckily there was one doctor who then contacted my parents in the middle of the night to tell them that she had diagnosed my condition as tuberous sclerosis complex (TSC), a rare genetic condition that causes benign tumors to grow in the body. She explained to them that I was also having infantile spasms.

I was then lucky enough to be a part of a UCLA clinical trial for a new drug at the time, which stopped my infantile spasms completely. My parents were also able to get guidance on how to support me from the TSC Alliance, however, my TSC resulted in developmental delay which meant I couldn't speak and had trouble sitting and crawling.

One of my earliest memories is from when I was around three, I was in occupational therapy trying to sit, and the therapist asked me to extend my arm, flip my palm over and shake a red ball. But I was still trying to figure out how to sit, so I couldn't do it, and I couldn't speak to explain, because of my speech delay I didn't know how to.

I was having speech, occupational and physical therapy but I wasn't really improving, so my mom decided to try piano lessons. When I was four, she hired five different piano teachers to give me private lessons. Each brought different perspectives and teaching styles in order to maximise my development. I had those five teachers until the age of 10, as well as other therapists coming to the house to help me outside of the piano work.

At age 5, I functioned as a 2 year old in many ways; my developmental delays meant my legs and arms were weak, but because of the piano work, I was at least able to hold a crayon. Yet my hands were so weak that I still didn't know how to button my cardigan and I had to ask my teacher to help. I felt so ashamed.

But continuing to play piano meant I was using my entire body, it was therapy for everything and my motor skills improved. By age 7, I had the strength to stand and hold a bowl of cereal for two seconds. I dropped it, but it was a very proud moment for me.

Doctors tried to tell my parents to treat me normally so I could live a normal life, but as a kid with TSC I thought my piano ability was pretty special. At around 10 years old, I started to participate in piano competitions. At first it was community competitions and regional competitions. Then in high school, I started playing in national competitions.

Pianist Emily Phan Lives With TSC
Playing the piano helped Emily Phan improve her motor skills. Phan experienced developmental delays after being diagnosed with the rare genetic condition, TSC, as a child. Courtesy of Emily Phan

By 18, I was the equivalent player to someone at a piano conservatorie, but with TSC holding me back on some developmental goals, I didn't apply to one and instead, in 2016 at the age of 20, I went to Pepperdine University in Malibu, which is a great school.

Professors at my university began to realize my potential and it woke me up. I can be quite intense; if I like something, I love it. I woke up one Saturday morning in 2017, at the age of 21, and I started practising for more than 6 hours a day. After a week I was practising for 10-14 hours a day.

At the same time, I began to catch up on my age development milestones very quickly. It was not easy, but I never gave up. By 2019, I was able to catch up and reach the same developmental level as an adult my age. That same year, I made my professor cry by playing a particular Bach Fugue she had learned during her doctoral studies.

I would still like to attend a piano conservatorie but for the past few years I put that aside and started to compete in international competitions. I've performed at Carnegie Hall in New York City twice, at the Richard M. Nixon Presidential Library in California and at the Mozarteum Concert Hall in Salzburg, Austria after winning first prize in my age category in The International Music Competition "Grand Prize Virtuoso." I was invited to go on a piano tour in Russia, but it would have been in December and it would have been so cold that I didn't go! A performance that was particularly special to me was playing at TSC's Comedy for a Cure in California in October. For the first time, I played as if no one was watching. I was able to express my emotions about my childhood with TSC, and who I am today, using the embellishments and expressions in the piece I performed. At the end of the performance, I was rewarded with the most heart felt standing ovation that I could have ever imagined. I bowed multiple times, yet people kept applauding.

Emily Phan Playing Piano
Emily Phan was diagnosed with TSC as a child. Phan is 26 now and has played piano since the age of four. Courtesy of Emily Phan

I'm also extremely proud of achieving a first prize award in a Best Chopin Performance international competition recently. The piece I played is about 40 pages long and took me two years to perfect; being a pianist is not as glamorous as people may think!

I love Chopin to the point that when I took part in a competition in Austria, my parents took me on a week-long tour of Poland, which is his birthplace. We visited the parks and coffee shops he composed in and toured his homes. I have been so privileged to have both of my parents unconditionally supporting me to pursue my dreams. They are always overjoyed to hear about any of my successes.

My goal now with piano is to use my gift to spread awareness about TSC and donate as much money as I can to make a difference, through benefit concerts and fundraising for TSC through my piano playing. I want to really heal people with piano. I am also teaching piano to others and I have had the honor to teach someone with TSC recently. We connected in ways I couldn't have imagined and I'm able to teach her in ways that make my heart move. I can help show her the ways the piano has enhanced my life.

For years I didn't let myself be seen, but I let people see me through my music. I was able to express everything through the piano and convey the words that I wasn't able to say because of my speech delay. I really have gratitude for every single phrase and melody I play. That's why I love the piano.

Emily Phan is an award-winning pianist living in California. She is also a TSC Future Leader for TSC Alliance.

All views expressed in this article are the author's own.

As told to Jenny Haward.