It is 9.30am on a Saturday and a middle-aged man called Ian is standing at the front of a conference hall in Central London. His voice is loud, his speech slightly slurred. Sixty of us listen attentively. We feel that we know Ian well, even though this is the first time we have seen him.

We have all been speaking electronically for years. For all I know, I might have chatted to those in the seats around me, too. The young dark-haired lady behind me could be the woman with whom I once shared intimate details of a meeting with my doctor. The girl in a wheelchair to my right might be the person to whom I silently raised my glass one evening, having heard via our message board that she had survived her operation.

Despite the differing appearances of those around me – ranging from young to old, very disabled to very able – we share a rare condition of malformation of blood vessels, called a cavernous angioma, in our brains. We were all born with them. Some, like me, have had brain haemorrhages from which we have recovered fully. Others, like the woman in the wheelchair, have been less lucky. Some, like Barbara, an elegant middle-aged woman sitting near the front, have a familial version – she has lots of cavernous angiomas in her brain, and her daughter is dying because hers are no longer treatable.

Attendees have travelled from France, America and Scandinavia to be here. Many have come to learn about the latest treatment, others to hear the latest genetic development. And, of course, all of us are there to be reminded that we are not alone.

Ian introduces Dr Neil Kitchen, one of the leading neurosurgeons in Europe, who talks about the latest research on whether surgery is advisable. He is followed by a director of molecular diagnostics at Wisconsin University, a leading light in Gamma Knife surgery – a ground-breaking form of radiotherapy – from the Wellington Hospital, northwest London, and a consultant neurologist at Western General Hospital in Edinburgh. Better expertise you could not find, and certainly not free of charge.

When I first typed “cavernous angioma” into a search engine 12 years ago, I did so less for information on my condition – I trusted my doctors – than to see if I could find anyone else with it (an estimated 100,000 people in the UK suffer from the condition). My search led me to the Angioma Alliance website, then an American site, and from there I could join its “forum”.

It took a while to pluck up the courage to do so. As with internet dating, I attached a stigma to belonging to a chatroom. I didn’t want to be part of such an ill gang. But when I logged on I soon realised that, like me, no one on the site wanted to be part of that gang, either. They, too, had been going about their daily lives, only to have them disrupted in an instant.

They didn’t want to moan about how hard it was. They wanted to share information – names of experts, recent research papers.

What I witnessed in the conference centre was the same scenario on a bigger scale, and an inspiring example of what some have called “patient power” but what, when stripped of its jargon, amounts to a vital resource when people face illness: our need to feel in control. It provided 60 patients with the chance to gain the kind of educated advice that would have taken months to distil online, or to find on our own.

That some of the world’s leading specialists sacrificed their Saturday morning is also a pointed reminder that when it comes to health, the internet can be a mutually empowering experience.

angiomaalliance.org.uk

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