A Path Rewritten: Kostiantyn’s Journey Through War, Rare Disease, and Film
Living with a rare disease can set individuals on paths they never anticipated.
For Kostiantyn Bidnenko, the course of his life was drastically altered by not just his rare disease, alkaptonuria (AKU), but also Russia’s full-scale invasion of Ukraine.
Forced to flee his homeland, his journey beyond Ukraine has since led to Romchyk, a short film about a young boy wounded by war, which recently screened for Pope Francis at the Vatican.
Julien Poulain, EURORDIS Communications Manager, meets with Ukrainian filmmaker Kostiantyn Bidnenko
We spoke with Kostiantyn about how AKU and war transformed his life, setting the path for an impressive new journey into filmmaking.
On 24 February 2025, the world will mark three years since Russia’s full-scale invasion of Ukraine. For Kostiantyn Bidnenko, this day is more than just a historical milestone – it is the moment his life took an unexpected turn.
“On the morning of February 24, 2022, my wife woke me up, screaming that the war had started. I heard explosions outside,” Kostiantyn recalls.
“At first, I thought I was dreaming, but then I opened the window and realised it was real. We immediately started calling family and friends to warn them.”
Like millions of Ukrainians, Kostiantyn was forced to flee. But Kostiantyn’s story is different. His rare genetic disease – alkaptonuria (AKU) – became a lifeline. While many men his age were barred from leaving Ukraine due to conscription, Kostiantyn’s health condition made him eligible to leave, presenting him with a difficult choice.
“In a way, my AKU diagnosis, which had long been a limitation, became an unexpected factor in my ability to leave Ukraine and get treatment. It was a strange feeling – shock, relief, sadness, all at once.”
Growing up with a rare and misunderstood disease
Kostiantyn was diagnosed with alkaptonuria (AKU) shortly after birth.
Also known as “Black Bone Disease,” AKU affects how the body breaks down certain amino acids due to a faulty enzyme. This leads to a buildup of homogentisic acid, which gradually deposits black pigment in connective and supportive tissues. Over time, this results in severe joint damage, chronic pain, early-onset arthritis, spinal fusion, and reduced mobility. In later stages, AKU can also affect other organs, potentially leading to kidney stones and heart problems.
In Ukraine, for Kostiantyn, information on AKU was extremely limited, and no one knew what to do with him.
“Most doctors in the country had never even heard of AKU,” he recalls.
“Many initially thought I was mistaken and meant PKU, which is a separate, more common disease. Some even told me I would likely die young.”
His mother decided to take matters into her hands. She searched for whatever resources she could find about AKU, eventually reading that vitamin C and a protein-restricted diet might help, but even the little effect that these options supposedly offered was not proven. His sister later started researching AKU online, uncovering more about the condition than most doctors in Ukraine knew.
“There was no roadmap for someone like me. We had to figure it out on our own,” he says.
For years, he managed. He played football professionally, signing contracts and pursuing a promising career.
Kostiantyn celebrates while playing football in his early 20s.
But as the disease progressed, so did his pain. By his mid-20s, his joints began to deteriorate and back pain gradually took hold.
“I had dreamed of becoming a professional player and played until I was 22 or 23, but the pain eventually made it too difficult.”
Forced to give up sports, he turned his attention elsewhere. But AKU remained a constant reminder of time slipping away.
War and a fateful departure
By 2022, there was finally a glimmer of hope – a recently discovered treatment for AKU was, according to Kostiantyn, supposed to become available in Ukraine. But then, war erupted.
“I was supposed to start nitisinone in summer 2022. But when the full-scale invasion happened, everything stopped. The hospitals, the supply chains – everything was disrupted.”
With Russian forces advancing, Kostiantyn and his wife fled Kyiv, travelling with a group of friends and family. Their goal was simple: get the women and children to safety while the men stayed behind.
But at the Hungarian border, something unexpected happened.
“I was expecting to be held back, like all the other men my age. But when the border guards checked my documents, they told me I could cross. Because of AKU, I was exempt from military service.”
It was a surreal moment – what had long been a persistent challenge had now become his gateway to a new life.
Yet, his journey was far from over. Like thousands of other Ukrainian refugees, Kostiantyn spent months moving between European countries, uncertain of his next steps.
An email that changed everything
One day, while staying with his wife’s family in Italy, an email arrived from a contact at the AKU Society in the UK.
“She told me about the UK’s Homes for Ukraine scheme and said they could provide me with free treatment if I moved to the UK.”
He considered going to Spain, where many of his wife’s close contacts had settled, but moving to the UK meant access to the treatment he needed. Given the ongoing challenges in securing the medicine across much of Europe, he knew this was likely his only real chance to slow the progression of AKU.
“I told my wife, ‘This is a sign.’ It was my opportunity to finally get the treatment and understand the extent of the damage AKU had done to my body.”
Thanks to the Homes for Ukraine scheme, Kostiantyn arrived in the UK and was able to access treatment at the National Alkaptonuria Centre (NAC) in Liverpool.
Starting a new life in the UK
The transition to life in the UK wasn’t easy. The first year was spent obsessively checking the news from Ukraine, volunteering to help his country, and worrying about family and friends on the frontlines.
But for the first time in his life, he had access to an effective treatment.
“Nitisinone has significantly improved the lives of AKU patients by slowing down and even in some cases halting the progression of the disease,” explains Nick Sireau, Chair and Chief Executive Officer, AKU Society.
“It is highly effective, reducing homogentisic acid – the culprit molecule that causes all the damage in AKU – by 99.8% and offering AKU patients a future they never thought possible.”
For Kostiantyn, the medicine proved to be life-changing.
“Living with AKU feels like a race against time. Before, I was running out of options. Now, I have a chance to live a normal life, to accomplish something before my symptoms get worse.”
From refugee to filmmaker: a dream reborn
During his time in the UK, Kostiantyn discovered a filmmaking master’s programme at Goldsmiths, University of London.
“I saw it and thought, ‘Why not me too?’ I had always dreamed of being a filmmaker, especially after my football career ended.”
He applied, was accepted, and recently graduated with a distinction.
Kostiantyn receives his master’s degree from Goldsmiths, University of London
His most significant project to date? Producing the short film Romchyk, based on the true story of Roman Oleksiv, a young Ukrainian boy who suffered severe burns in a Russian missile attack in July 2022, which also took his mother’s life.
Despite enduring over 35 surgeries, Roman remained determined to pursue his passion for ballroom dancing. Romchyk captures his resilience and the broader impact of war on children.
Filmed in London with the help of fellow Goldsmiths students, Romchyk creatively transformed local parks and studios into Ukrainian settings, with a Ukrainian community group assisting in finding Ukrainian children who could act and dance.
Recently, Kostiantyn received a personal invitation to screen the film for Pope Francis at the Vatican during the International Summit on Children’s Rights.
“For us, Romchyk is a symbol of all children’s suffering because of the war. His resilience and strength of spirit inspire and give hope.”
Kostiantyn and Roman meet with Pope Francis at the Vatican
It was a historic moment – the first time the Vatican had ever hosted a screening like this. The film has since won awards, including at the Cambria Film Festival in California, and is being entered into other international short film festivals.
A future still unwritten
Even as he builds a new life in the UK, the war in Ukraine remains at the forefront of his mind. Many of his friends are still fighting on the frontlines.
And despite all he has built, he’s not sure if he will ever be able to return to Ukraine – even if the war ends.
“I don’t know what the future holds,” reflects Kostiantyn.
“But I know one thing: I will keep telling stories that matter. Whether about AKU, about war, or about overcoming adversity more generally, I want to make sure these stories are seen.”
Julien Sireau, Communications Intern
Julien Poulain, Communications Manager
- Follow the success of Romchyk on Instagram: @romchyk.thefilm
- Read more about Kostiantyn and the story of Romchyk: ‘The ballroom boy with burns who inspired a film,’ BBC News