Ljiljana Alagić
„We have only one life, and it would be a shame not to fight for it — to live it as long as one can."
She first noticed symptoms in the ninth month of pregnancy. The diagnosis came only after detailed testing — when more than 30 tumors were found in her body. Years of operations and a fight for life followed, along with learning that her son Dorian has the same disease. Today she leads the association and fights for everyone facing VHL syndrome.
Ljiljana Alagić, president of the newly founded Association of patients with Von Hippel–Lindau syndrome in Serbia, was a guest in the “Your Story” section of Kurir, where she candidly shared her nearly two-decade-long experience with VHL syndrome — a rare inherited disease that her son also inherited.
She first felt symptoms in the ninth month of pregnancy. She received the diagnosis only after detailed testing, when more than 30 tumors were discovered in her body. Years of operations, adjustments and, as she says, a lifelong fight followed — not only for her own health, but also for her son Dorian, who inherited the same mutation.
“My son Dorian has watched me since he was fourteen months old as someone who fights, who gets back on her feet.”
“We have only one life, and it would be a shame not to fight for it — to live it as long as one can.”
Beyond her personal experience, Ljiljana also speaks about the reasons for founding the association: the unavailability of modern therapy in Serbia, the absence of a formal patient registry, and the need for systemic support for families facing rare inherited diseases.
You can read the full interview on Kurir's website: Living with VHL syndrome: the testimony of Ljiljana Alagić
Article author: Olivera Marković, Kurir Zdravlje