I'm told this is a rare genetic blood enzyme disorder. My first blood work
came in as below normal (which triggered the diagnosis) and the second time it
came in just above normal. My doctor now seems to have lost interest in my
case so I am resorting to the internet for information on the condition and
any leads on doctors who maight have special knowledge of or an interest in
this condition. In the meantime, I am left with a problem digesting much food
(sometime it's as though my chest wall/esphagus just freezes up or becomes
paralyzed) , low weight, a white blood cell count that is often below normal,
multiple 'supposed' allergies, fatigue, etcetera, etcetera.
Amy info would be appreciated. My e-mail address is redsky at nfld.com.
