Internet Magazine, Issue 80, July 2001, page 34

Letter Of The Month

“At The Borders Of Science, Head Online”

Jon Gregory (Mailbox, June) asked people to step forward with positive news about the Net helping people.

I have a life-threatening blood condition called thrombophilia. It is heavily sensationalised in the media in association with blood clots caused by air travel but in my case it is due to a rare hereditary condition called Protein S Deficiency (PSD).

When doctors first diagnose a person with PSD they usually say they don’t know anything about the condition because it is so rare and leave the person to figure it out for themselves. Imagine you were just diagnosed with cancer and not given any further information, and you’ll realise just how distressing this can be.

The rarity of the condition causes a vacuum of information at the doctor-patient level but many people turn to the Internet for answers. The weakness of obscurity becomes a strength online.

Although our site was launched less than a year ago we now have 100 or so members. There are only likely to be a few thousand people like us worldwide. Everyone comes with their own unique experiences and although some of them are upsetting, many are quite heartening. Together we are gathering knowledge and helping to support one another with practical information. It’s rather ironic that we’re now also starting to inform doctors and medical professionals.

Until we break the digital divide by putting everyone online we’ll always fall short of reaching everyone. I’d like to see the Internet evolve into a free public utility much akin to street lighting. Full access would revolutionise the way we use the Net to help one another and I think it’s achievable within the decade.

James Slattery-Kavanagh
www.proteinsdeficiency.com

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