Virag's Inspiring Interview: "Ehlers-Danlos Syndrome stole my dream career as a professional pianist...but music continues to bring me happiness!"
- Ellie Howe
- Sep 5
- 5 min read
Updated: Sep 10
"I live with Ehlers-Danlos syndrome, but the most important thing to know about me is that I'm a pianist. At least, I was, until my illness stopped my career..."
For many of us, our passions and hobbies shape who we are. They give us a sense of identity, belonging, and purpose - and they're often the things that bring light to even our most difficult days. But for people living with chronic illness, holding onto these parts of life can feel painfully out of reach as pain, fatigue, and the unpredictability of symptoms can make it difficult to keep doing the things they love most.
This is the reality faced by our latest inspiring interviewee, Virág. Growing up in Hungary, music became the centre of Virág's world when she started learning the piano. She quickly fell in love with it and dedicated herself to improving her skills, practising for hours each day. What began as a childhood hobby soon became a serious pursuit, with hopes of building a career as a pianist and dreams of performing to audiences around the world.
For Virág, music wasn't just something she enjoyed - it was a way of expressing herself and sharing something meaningful with others. But that dream began to feel fragile when Virág started experiencing unusual symptoms. She recalls, "I noticed many strange symptoms throughout my childhood, at that time I never thought they could be signs of a serious illness."
"I was in my teenage years when I first started to think that something was really not okay with me," she continues, "First, my heart and breathing-related symptoms appeared, and after a while, my hands went numb and started to lose their strength. This was when I became worried about my career as a pianist, so I went to the doctor."
What followed was nearly a decade-long search for answers as doctor after doctor dismissed her symptoms. "Little did I know," she explains, "it would take almost 10 years to get a diagnosis. And I also wasn't prepared for it to turn out to be an incurable chronic illness."
The turning point came when Virág met a specialist in connective tissue disorders. Unlike so many before, this doctor immediately recognised the cluster of symptoms she had been enduring for years as signs of Ehlers-Danlos Syndrome (EDS) - a connective tissue disorder that affects the body's production of collagen. Collagen is the protein that gives structure and strength to the skin, joints, and blood vessels. For those with EDS, like Virág, the connective tissue is too lax to properly support the joints, leaving them unstable and vulnerable to frequent subluxations and dislocations.
To find out more about Ehlers-Danlos Syndrome, click the link below:
Ehlers-Danlos Syndrome
Ehlers-Danlos Syndromes (EDS) are a collection of genetic connective tissue disorders that mainly impact the skin, joints, and blood vessels.
After a decade of searching for answers, Virág was diagnosed with Ehlers-Danlos Syndrome (EDS).
After almost a decade of searching, finally having a name for what she was experiencing was life-changing because, for the first time, she felt seen, validated, and understood. But as the initial relief of diagnosis settled, so too did the reality. As Virág painfully pointed out earlier, there is currently no cure for EDS, and treatments focus only on managing symptoms rather than addressing the root cause. But for many with EDS, this isn't enough to restore the quality of life they once had.
"Now I live with constant pain," Virág explains. "My symptoms can worsen unpredictably, and sometimes my illness even threatens my life. Coping with it is incredibly difficult, both physically and mentally."
As she reflects on what has been the hardest thing to accept since her diagnosis, she continues, "Accepting that I can't do most of the things I used to love has been challenging as, for me, playing the piano was more than just a career; it gave meaning to my existence."
But, for Virág, the progression of her illness meant not only the physical inability to play, but also a painful unravelling of her social life. "One of the hardest things has been realising that most people - even those I thought were close - weren't really interested in me once they knew I was sick," she says. "They didn't ask how I was coping and often acted as if I didn't exist at all, leaving me to face a great deal of heartbreak and disappointment."
Her story echoes the experiences of many in the chronic illness community. As our conditions progress, we often find ourselves forced to give up more and more in search of even a small measure of relief. For Virág, that meant sacrificing her career as a pianist. With those sacrifices comes not only physical struggle, but also a deep sense of loss and grief for the lives and dreams we once envisioned, and the futures we thought we would have.
"Even though I couldn't become the professional pianist I once dreamed of being, I still play, and despite the pain it causes, it continues to bring me happiness!"
Even though her illness forced her to step away from the dream of becoming a professional pianist, music continues to be one of Virág's greatest sources of joy. In recent years, she has created a YouTube channel and an Instagram account where she shares her performances, giving her the chance to connect with an audience in a way that her health no longer allows in person. Although it may not look like the career she once imagined, every like, comment, or message of encouragement reminds her that she can still reach people through music despite her illness.
Check out Virág's instagram and youtube channel where she shares her music:
Additionally, Virág finds strength in the relationships that have lasted through her illness. While she's experienced heartbreak from the people who drifted away, the ones who remain close remind her that she is loved for who she is, not for what she can do. "What makes me happiest is when someone can love me as I am, despite my illness, without pushing me to do things I can't," she shares. "A perfect moment for me is sitting in a small bakery, drinking coffee, enjoying the sunshine, and talking without anxiety about what I say. Luckily, I get to have many coffee dates like this with my mom, my sister, and a few close friends!"
Despite everything she has lost, Virág has found ways to keep creating joy in her life by continuing to play the piano whenever she can, sharing her music online, and keeping up with her university studies. Through these small but meaningful acts, she has reclaimed pieces of her life, showing that while illness can change the path we walk, it does not take away our ability to create joy, purpose, or connection. Her choices show us that, while chronic illness can take so much from those it touches, it is possible to hold on to what gives life meaning and to find ways to keep moving forward.
To others who are struggling with chronic illness, Virág offers a note of hope shaped by her lived experience: "Don't be afraid to keep doing the things that make you happy," she says, "Even if you have to do them differently than before. Your hobbies, your studies, your work - they still belong to you. Illness may change the way you live, but it doesn't erase your worth, and it doesn't take away your right to create joy."
She continues by saying, "And never give up on yourself, even when everything feels overwhelming. Good people and good doctors do exist, but they can be difficult to find, and it may take time."
Thank you Virag for sharing your inspiring story for the 'A Note of Hope' project!
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