Dietary control is the most effective treatment for patients with inherited metabolic
disorders like Phenylketonuria, Maple Syrup Urine Disease, Amino Acid Metablic
Disorders and Homocystinuria, etc. Patients should strictly control the amount of
their food intake, especially food that contains protein such as meat, fish, beans,
eggs...etc., and even the ingestion of carbohydrate, like rice or noodles need to
be carefully measured. In order to help patients and their families make correct diet,
we have been holding nutritional classes for patients and parents to learn more
about food ingredients and correct dietary control. In 2003, in order to diversify the
food choices for the patients, we began to purchase low-protein flour from UK. We
also bought low-protein chocolate and cookies from Japan and invited famous
bakers and professional instructors from culinary schools to teach patients and their
families make low protein cakes and desserts.
Almost all the low-protein foods come from abroad and it could be difficult for parents in
Taiwan to purchase these food and ingredients because of the hindrance of language
or the high cost of transportation. Also, official regulation on food importation is not
clear and sometimes low-protein food ordered by TFRD cannot pass custom clearance.
Therefore, to solve these problems, we collaborated with the food importers and asked
them to bring in popular low-protein food such as low-protein rice, noodles, bread, cake
flour and cookies. Then we distributed low-protein food coupons worth around
$6,500 NT dollars to patients. Patients would receive two kinds of coupons: coupons of
different face values with total amount around $3,500 NT dollars; coupons that can be
used to exchange for 2 packs of low-protein noodles and 4 packs of low-protein rice.
The coupons are distributed once a year. Patients only have to pay for the freight and
the food will be sent directly to the address assigned.
Last year, low-protein food coupons were distributed to 63 patients and TFRD totally
subsidized $323,965 NT Dollars. Most patients give positive response regarding this
project because it releases their burden on purchasing the low-protein food, gives
them more options when choosing different foods without worrying about the food stocks. |