A life-saving hobby

How the internet and an enquiring mind are not necessarily dangerous!

Written by Greyowl55, published over 2 years ago.

My life-long hobby has been genealogy; family history. Such things as ages and causes of death interest genealogists. I spotted a cluster of cancer related deaths at young ages in one distant section of the family, made contact and was told that they had VHL. Wondered why my father had died at 43 of a brain tumour. In 1965 these things were not known. Obtained his death certificate - a hemangioblastoma. Did some research, made the connection - approached my doctor with a file of papers and he agreed to refer me to the genetecist. Blood test - positive for VHL. All the bits of the jigsaw fell in to place; the vision disturbance, the ridiculously high blood pressure, the uncontrollable sweating, the abdominal pains, the feelings of impending doom.

I can only say that but for my hobby and but for our superb National Health Service here in the UK, I would no longer be here.

Things have been quiet since my adrenal glands were removed 6 years ago. But, since the discovery of a tumour in my spinal cord at Christmas, I feel it in my blood that things are limbering up again, so I have started a tweet on twitter.com to log progress.

Search for @greyowl55 if you wish to follow.

And best wishes to all my fellow sufferers!

Written by Greyowl55, published over 2 years ago.

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