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We put these pages up a year ago this November. It was not unlike scattering breadcrumbs in a dense and lonely forest.

We knew that if we put out these small crumbs, we would attract somebody. We didn't know how many (or how few) patients there were with a systemic illness, access to a computer and the will to look for information.

It was gamble that has paid off.

The Savvy mailing list has grown from 20 subscribers to over 200. This webpage has been visited several thousand times.

We receive phone calls, snail mail and inquires from New York , New Delhi and New Zealand -through the miracle of the internet.

We have gone from a 22 year-old being our youngest patient to several "kid patients" -one as young as four.

We have met grandmothers who have successfully and smilingly survived twenty years or more with a systemic illness. One of our retired members is on her way to China this week - for the second time.

Another member studies pre-med to specialize in the diagnosis and treatment of these peculiar and little-understood illnesses.

Others, whether patients, caregivers, mothers, fathers, spouses, sisters, or brothers give their time, effort and love to a largely unmet and unseen audience.

Finally, the list has subscribed physicians, health professionals and students with an interest in the vasculitides. Not huge numbers, but they are here - on the list.

In the last few weeks of our anniversary year we were pleased to linkup with St Thomas Hospital Trust Lupus site in the UK and with the Lupus list at acor.org.

This has given us the energy to go on -- making new pages and making new friends on Savvy.

Savvy will grow. We will find better treatment protocols. We will find each other.

Between a rock and a hard place...

You've got these rare diseases, see.
And you go to the ER because you can't breathe. You are sucking on atrovent and albuterol - and you still can't breathe.

You break out in hives. You contract a staph infection in the hospital.

You are flooded with tests, injections and interrogations.

You are an “interesting case”.

You are between a Rock and a Hard Place... and all you really want is peace and quiet and a pecan waffle.

a personal story by Melanie Valentine

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