Desanka received her porphyria diagnosis three days after giving birth: ‘For months I couldn’t hold my baby daughter – at 42, I had to retire’

Desanka first encountered this rare disease 25 years ago when her brother was diagnosed with porphyria – not knowing that just a few years later, she would face it herself.
“My first encounter with porphyria was back in the year 2000, when my own brother was diagnosed with this rare disease. Just days after the symptoms began – severe abdominal and back pain, an unnecessary abdominal surgery, and clinical death – he was transported from the General Hospital in Požarevac to the Emergency Centre in Belgrade, where he was diagnosed with porphyria. The haematology department saved his life. As a consequence of porphyria, my brother also developed epilepsy,” Desanka begins her story.

That was when the research began – what this illness was, what causes it, what the symptoms are, and how to live with it.
“In 2007, three days after giving birth via caesarean section, I was discharged from hospital and sent home. Severe abdominal pain started on the very first day, but the doctors dismissed it, telling me I was exaggerating, being overly sensitive, and that it was normal because I’d just given birth. Once I got home, my condition worsened. In addition to unbearable stomach pain, everything else hurt too – I was so weak I couldn’t get out of bed on my own.”

Desanka was sent back to hospital, where the medical board decided to operate again – something she refused.

“I recognised the symptoms and pointed the doctors toward porphyria. The General Hospital in Požarevac had no capacity to test for porphyrins – and still doesn’t – so they sent me to the Emergency Centre in a very serious condition. There, in the haematology department, I was diagnosed with acute intermittent porphyria. Recovery took a long time – for months, I couldn’t even hold my newborn daughter. That was the hardest blow this illness ever dealt me – going from a professional athlete to a complete invalid who needed others to care for me,” she says.

Porphyria is highly aggressive and unpredictable

The biggest triggers for porphyria are stress, fatigue, inappropriate medication, and overexposure to sunlight. The trouble with acute intermittent porphyria begins in the liver and eventually affects the entire nervous system, which speaks to the seriousness of the disease. Under the influence of neurotoxic porphyrins, vital organs can shut down if symptoms are not recognised and treated in time.

“The first thing I learned was not to ignore abdominal pain. I learned to listen to my body and to recognise porphyria. I adapted my life to the disease – regular meals rich in carbohydrates, as much sugar as possible, and enough sleep. That was the only way I could function and live a normal life.”

Even so, there is always the fear of a sudden acute attack, because the illness is unpredictable and very aggressive.

“I never gave up on sport – I slowly regained my fitness and looked forward to playing again. This time, as a recreational player for the VGSK Veterans women’s handball team. My teammates didn’t know about my illness or what it involved. Once, after a severe acute porphyria attack and several days in hospital, I played an entire handball tournament. Our team won – and I was part of that triumph.”

At 42, I had to take medical retirement

Three years ago, Desanka experienced a traumatic event that changed her life.

“My brother Ivan passed away following an epileptic seizure caused by porphyria. Because he didn’t receive proper treatment or have access to therapy at the time, his life was cut tragically short. After that, my own acute attacks became more frequent – several times a month – and the consequences grew more serious. This condition forced me to take medical retirement at the age of 42, after 20 years working in the police.”

Desanka no longer plays sport, but she tries to live as normally as possible – though, she says, that is becoming increasingly difficult.

“Thanks to the Porphyria Association of Serbia, we now have access to genetic testing for porphyria, which greatly helps with diagnosis. Only fast and precise diagnostics can improve our quality of life. The problem is that the state still does not make testing for children accessible. As a parent, my biggest fear is that my child might have inherited the gene. The Association has been a real help, because going through the state system is extremely complicated and slow – both due to doctors not being well informed and due to bureaucracy,” Desanka explains

Therapy exists – but is difficult to access

She adds that this system needs to change and be simplified, because if the disease is detected early, it’s much easier for patients to adapt to life with it.

“There is therapy for genetic porphyria, but it is difficult for patients to access. It’s only available through the National Health Insurance Fund for rare diseases, and a special committee decides who receives it. Some patients wait over two years for treatment. In the meantime, young people are dying. I sincerely hope this system will change, and that therapy will become available to all those suffering from porphyria.”

Desanka’s greatest support comes from her family, a few close friends, and the wonderful people who make up the National Porphyria Association of Serbia.

“It means a lot to be able to talk openly about the problems we face. People with porphyria may be few, but they are not alone. The National Porphyria Association of Serbia is not just a typical organisation – it’s one big family, where we all represent a symbol of understanding and support for one another.”

There must be more public discussion about rare diseases

“My message to everyone suffering from rare diseases is that we must talk about them, because that’s the only way we come out of the shadows, the only way we’re recognised, and the only way we can truly do more to help everyone live better, more fulfilling lives,” says Desanka.

A hug as support for people with rare diseases: They must not be invisible, say representatives of NORBS.

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