“It is with a very heavy heart that my wife and I would like to inform you of the passing of our son, The POLG Foundation Founder and Creative Director, Frederik,” his father, Prince Robert of Luxembourg, revealed via the POLG Foundation website.
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Prince Frederik was diagnosed with POLG at 14. The disease in question that claimed his life is believed to have a wide range of symptoms and affects many different organ systems, which makes it extremely difficult to diagnose and treat.
What is POLG disease?
The deceased young man started the foundation in 2022, which describes the disease as a “genetic mitochondrial disorder that robs the body’s cells of energy, in turn causing progressive multiple organ dysfunction and failure.” The uncommon genetic disorder has also been compared to a faulty battery that never fully recharges and is in a constant state of depletion.
According to the United Mitochondrial Disease Foundation, a cure for POLG disease has yet to be discovered. Available treatment for the mitochondrial disorder focuses on managing the symptoms and quality of life.
POLG disorder is hard to detect
As the powerhouse of the cell, the mitochondria contain their own DNA which, to replicate, requires an enzyme encoded in the host cell’s POLG and POLG2 genes, per the POLG Foundation. Ultimately, inherited mutations in those genes compromise the mitochondria DNA’s replication. The UMDF states that over 200 disease-causing POLG mutations are currently known.
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Depending on when the disease emerges, its symptoms range from mild to severe, including ophthalmoplegia, muscle weakness, epilepsy and liver failure.
“As is the case for 300 million people like Frederik worldwide, these diseases are usually hard to recognise even by physicians, and patients’ families may never know what they are suffering from as they may only be identified very late in their progression,” Prince Frederik wrote.
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