Post journalist JEREMY LEWIS comes from a family affected by VHL …
WHEN my father died in 1965, aged 43, the official cause was a brain tumour. Many more years passed before one of his four sons, my brother Richard, established the link with Von Hippel-Lindau disease.
Richard is an amateur genealogist and discovered a concentration of deaths in another branch of the family.
He learned from a distant relative that something called "VHL" ran through that particular branch of the tree.
On discovering that VHL symptoms can include brain tumours, he found that a common ancestor had endured a similar illness, raising the possibility that our father had carried VHL.
Richard had himself tested. The outcome was positive and later various symptoms emerged: kidney cysts and small tumours in the eyes; tumours in the spine and adrenal glands and, most recently, an abdominal tumour which is cancerous but should be removable.
On Richard's advice, I took the test at City Hospital. Like our two other brothers I received a "negative".
Happily, all three of Richard's children were cleared … meaning his grandchildren will be untouched. Now 57, a retired police officer from Aberystwyth, he is philosophical about his condition and the tiring drugs and regular check-ups.
"I've been told I probably won't live to a grand old age but I don't have a brain tumour and I'm not in a wheelchair. I've got off lightly and at least I know that, in our branch of the family, VHL will die with me."