Voices of our community
Behind every diagnosis is a person, a family, a struggle and hope. These are the stories of those who agreed to share their experiences.
Anonymous community member
It all began around my birth in 2000, when my father was also diagnosed with VHL. My grandfather was, as later assumed, the index patient in the family. I was confirmed in 2009. This is a story about inherited VHL across three generations — about constant anxiety and the hope the community brings.
Read the storyAnonymous community member
At 15 they operated on my eye, but no one knew what it was. Ten years later, back pain and an MRI revealed a tumor in the spinal cord — and Von Hippel–Lindau syndrome. This is my journey to a diagnosis.
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Ljiljana Alagić
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.
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