• STORIES

    DD, Aged 17

    When people would talk they didn't know what to say which was understandable.  more...

  • STORIES

    Mimi - 15 years old

    I lost myself doing stupid things, angry and sad and depressed at everything. I ended up failing my classes, not caring about school, and getting into fights.  more...

  • STORIES

    Chelsea - 14 years old

    I stuck my head round the door in the room mum was in, and she looked really ill. I couldn't understand what was happening - one minute my mum was fine and the next she was ill.  more...

  • STORIES

    Clair - aged 14

    Something I wish is I could just have one more day with my dad! - to tell him how much I love him and how sorry I am for all the bad things I have said and done to him!  more...

  • STORIES

    Nicole - 17 years old

    This time the doctors are unable to operate. He has already had 6 sessions of chemo and is having another 6 sessions. I cannot help feeling I may lose him.  more...

  • STORIES

    Rirrif - 15 years old

    I have been staying with my dad because my mom doesn't want me around when she is sick, which is all the time. My dad works at night so I spend a lot of time alone since I'm not with my mom. I'm afraid she is going to die and I'll blame myself for not being there more. more...

  • STORIES

    HT - 13 years old

    She has been so strong about this and is keen to put it all behind her.  more...


Von Hippel - Lindau Syndrome (VHL)

An inherited disorder where blood vessels do not grow in the way they should. Tumours, both benign and malignant (cancerous) can occur as part of Von Hippel-Lindau, and these are most commonly found in the kidney, pancreas, liver or adrenal glands. Sometimes they are benign and sometimes they are cancerous. Von Hippel-Lindau is named after two doctors who undertook a lot of work in the area. (Dr. Eugen von Hippel who described the disease in the eye in 1904 and Dr. Arvid Lindau described the angiomas of the cerebellum and spine in 1926).