For those of you that do not know, galactosemia is a rare metabolic disorder (so rare that my spell check does not even accept it!) Galactosemia is not an allergy to milk or an intolerance to lactose, but is a genetic deficiency in an enzyme responsible for adequate galactose degradation. There is no cure for galactosemia, but it is treated through a restricted diet. Left untreated, galactosemia can cause several severe symptoms: kidney failure, an enlarged liver, cataracts, poor growth, and physical and mental disabilities. Mortality in infants with galactosemia is about 75%.
I would just like to state that I have no medical background and no posts should be used as medical advise. Having said that, I have been living with galactosemia for over 28 years and want to share this blog as an avenue to discuss food, recipes & the day to day experiences with living with galactosemia!
Although this first post is a bit depressing, I would also to say that I have lived a very special life and have been blessed with great friends, family and amazing experiences. I have been fortunate enough to have many amazing travel adventures, many great relationships and have thrived in my educational and professional life. Living with galactosemia, like any illness can be a lonely battle & I hope this blog can bring you or your loved ones some comfort to know that you are not alone.