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After half a dozen years and as many doctors, I was finally diagnosed within seconds by a facial reconstruction/plastic surgeon.
You will most likely have to educate yourself looking up articles in medical libraries and then educate your doctor (since it is such a rare disease, medical books on hand don't reference it).
If you get a doctor with a god complex who doesn't like being told they don't know everything, you should probably come prepared, which happened to me. Ask for a second opinion or referral and move on. You are your own best advocate.