Let me begin by saying I know nothing about this condition so I can't help you there.I suggest you find out as much information about this condition independent of the medical profession as you can and decide whether this condition can be cured by lifetyle,dietary or other means.View the medical profession as a last step alternative if the condition is incurable . You are taking the right first step in asking questions on this board.Maybe a nutrition or disease relate board may be the next step.Heck yahoogroups has so many speciallized boards they probably have one on this condition.You may want to also try a holstic health type practitioner but can't vouch for this because I can't remember thelast time I was in a doctors office.Good Luck