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From the presentation given at the National Coalition for PKU and Allied Disorders Metabolic Conference in Ohio in May 2001.

During the breakout session on Friday, the MSUD families heard Dr. Pinar Ozand of Saudi Arabia. A graduate of Ankara University School of Medicine, Ankara, Turkey, Dr. Ozand has studied and worked extensively in the United States. Since 1985, when he was recruited by the Saudi government, he has operated a very sophisticated clinical center for the diagnosis and treatment of inborn errors of metabolism at King Faisal Specialist Hospital in Riyadh. He gave us a new perspective on the care of these difficult metabolic diseases, especially MSUD, in a culture so different from our own.

One of the difficult problems in places such as Saudi Arabia, and other middle eastern countries, is that families tend to "hide" those suffering from diseases such as this. If parents do bring a child to be treated, they may not tell the rest of the family. It makes it very difficult to test other family members to see if they are carriers, and it can make it harder to nsure good follow-up care.


This is part of the MSUD Parent Group at the National Coalition Conference

Dr. Ozand told us of his many early "bitter" failures in his attempts to treat MSUD. He sees three distinct time periods in his nearly 17-year-long career treating metabolic diseases: a period in which all his patients died; a period where he had limited success in treating the diseases; and a third period up to the present where he has been very successful in keeping the patients alive and has secured good outcomes.

Currently, Dr. Ozand has over 2,500 patients with over 140 different metabolic disorders under current follow-up in his own clinic. Metabolic cases are referred to him from all over the Arabian Peninsula.

An enthusiastic proponent of Tandem Mass Spectrometry, he opened the first mass scale application of it in Saudi Arabia in 1991. The clinic receives 400 to 500 new patients with inborn errors of metabolism each year; and thousands of blood samples are received each year for tandem MS and urine testing.

Dr. Ozand told us there are more MSUD in Saudi Arabia than PKU. He averages one new MSUD patient per month. He is a very busy doctor in a very needy area.

CHANGE THE LIVES OF MSUD ADULTS AND CHILDREN

The MSUD Family Support Group is currently funding several research projects and we are proactively looking for researchers interested in developing new treatments or finding a cure for MSUD. Significant funding is necessary if we are to accomplish this goal.
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