What you don't know can kill you!

A family turns its pain, tears into a weapon against rare disease

BY KIMONE THOMPsON, Senior reporter Special Coverage Unit

THEY say what you don't know can't hurt you. But in the case of the Creary family, who lost a loved one to the little known disease vasculitis, ignorance proved deadly.

If they had been better guided by the medical doctors from whom they sought attention, their only son Ricardo Lee could have had more time with them, or at least have been more comfortable in his last days, the family is convinced.

"That has been painful, very, very painful because we sought the best medical treatment ever," says bereaved mother, Olive Creary. "It wasn't a case where he was ill and nothing was done. We went to Florida like three times to see the dermatologist, he went to Cleveland, Ohio where the Vasculitis Centre is located (but we didn't know it at the time), and when he wasn't getting any better, there was just no mention of seeing any other specialists.

The rest of the story is here.

My comments: I feel so badly for this family. It is something we tell newly diagnosed patients the importance in having an experienced Vasculitis doctor. Most doctors do not have the experience to treat us.