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MSUD SYMPOSIUMS IN BRAZIL

Dr. Selma Jeronimo from Brazil (photo taken at Symposium 2002 in Ann Arbor, MI)

A group of physicians and families of patients with inborn errors of metabolism in Brazil organized a symposium in December 2002. The objective of the symposium was to assess these illnesses in northeast Brazil and to organize a protocol to treat and follow those patients. Five families from Rio Grande do Norte and one family from Ceará who have children with MSUD attended the meeting. In addition, physicians from Paraíba, Pernambuco and Ceará (northeastern states of Brazil), medical students and residents participated in the symposium. A total of 75 attended the 3-day meeting.

Guest speakers and their topics:

♦ Dr. Ricardo Pires, Universidade Federal do Rio Grande do Sul, Porto Alegre, RS, spoke on Inborn Errors of Metabolism.

♦ Dr. Renata Benardes de Oliveira Nutritional, Universidade Federal de São Paulo, spoke on the Nutritional Aspect of MSUD and Phenylketonuria.

♦ Dr. Paulo Matos, Universidade Federal do Rio Grande do Norte, spoke on the Profile of Inborn Errors of Metabolism in Rio Grande do Norte.

♦ Dr. Selma M.B. Jeronimo, Universidade Federal do Rio Grande do Norte, spoke on The Laboratory Support For the Diagnosis of Inborn Errors of Metabolism.

♦ Eimard Fernandes and Giovanni Medeiros (who attended Symposium 2000 in the United States) spoke on The Difficulties and the Stress of Caring for Children With MSU

Dr. Strauss with Laura (MSUD), the daughter of Giovanni & Aninha Medeiros from Brazil (photo provided by Giovanni)

We had originally planned to have Dr. Kevin Strauss from the Clinic for Special Children join us at the December symposium. However, his visit was postponed until March 2003 when he spent three days at a Natal symposium speaking to physicians, nutritionists and five families of patients with MSUD. Dr. Strauss also held a clinic and reviewed some cases of MSUD. There was a discussion on the protocol for treating MSUD and on plans for setting up a laboratory for monitoring children with the disease.

As a result of these two meetings, a group of physicians and nutritionists interested in inborn errors of metabolism met to discuss plans for establishing a laboratory. We are hoping that within a year a better hospital and laboratory support will be established here in Natal as a result of these discussions. A project for funding the laboratory was submitted to the Brazilian Minister of Health.

Funds for the organization of both symposiums were provided by the Brazilian families with MSUD and the Federal University of Rio Grande do Norte. The families were the major force behind the organization of the professional meeting and the symposiums. I think that those families with MSUD patients, both here and in the United States, are unique in terms of their efforts to cope in a very positive way with the disease and to influence changes in the way we physicians conduct research and treat patients. I was quite impressed by the attitudes of the families both here in Natal and the ones we had the privilege to interact with when I attended Symposium 2002 in Ann Arbor, Michigan last July.

—Selma M. B. Jeronimo, MD

NOTE: The United Services Foundation has been giving generous donations to support the MSUD Family Support Group Symposiums which are held every other year in the United States. This support provides an opportunity for the organization to assist families who would like to attend a Symposium for the first time. With this support, the Eimard Fernandes and Giovanni Medeiros families from Brazil attended the MSUD Symposium held near Boston, Massachusetts in the summer of 2000. They returned to Brazil determined to earn enough money to attend the next Symposium in 2002. Instead, they made a decision to use the money, which they and other families raised, to send Dr. Selma Jeronimo from Brazil to the U.S. Symposium in Michigan in 2002. The above article tells the results of that wise decision. Through the determination and sacrifice of these families, MSUD treatment is improving in Brazil. We commend these families and the professionals who are working to improve the treatment and lives of those with MSUD in Brazil.

MSUD IV SOLUTION

AVAILABLE FROM GERMANY

After Symposium 2000, Giovanni Medeiros from Brazil was convinced of the need to have MSUD total parenteral nutrition (TPN) available for the children with MSUD in Brazil. Obtaining this IV solution when an MSUD child is hospitalized is often difficult in the United States and has been nearly impossible in many other countries. Giovanni was determined to find a ready source of the MSUD IV solution to use in TPN for MSUD. MSUD TPN is used to quickly lower the branched chain amino acids (BCAAs) in sick children who cannot take their formula by mouth.

Giovanni located a source in Germany from which doctors can order the solution. The Pharmacy of the Municipal Hospital Munich-Bogenhausen, Englschalkinger Str. 77, 81925 Munchen, stocks an MSUD 7.6 % solution free of the BCAAs. The solution is produced as an infusion with a shelf life of 3 years when stored at 8°C. Further compounds can be added to make the MSUD TPN. The pharmacy may be contacted by e-mail: KMB.Apotheke@extern.Irz-muenchen.de, fax: 49/89/92702316, or phone: 49/89/9270-2320. Two additional companies have expressed interest in making an internationally available amino acid solution–one is in the United States.

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