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Situation of children with Congenital Hyperinsulinism in Argentina and Latin America
 

Situation of children with Congenital Hyperinsulinism in Argentina and Latin America

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Situation of children with Congenital Hyperinsulinism in Argentina and Latin America

Situation of children with Congenital Hyperinsulinism in Argentina and Latin America

Situación de los niños con Hiperinsulinismo Congénito en Argentina y América Latina

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  • Queremos destacar y remarcar como siempre, la importancia que los médicos tengan la APERTURA para abrirse al conocimiento y contactarse con médicos de Centros Especializados de Hiperinsulinismo Congénito. PEDIMOS a los neonatólogos y endocrinólogos latinos que se interioricen sobre el HIPERINSULINISMO CONGÉNITO para que los diagnósticos no sean tardíos, los niños no presenten secuelas neurológicas o fallezcan por esta patología!!.

    4º Encuentro de la Sociedad de Endocrinología sobre Hiperinsulinismo Congénito. Berkeley, California. 15-16 de junio-2013
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    Situation of children with Congenital Hyperinsulinism in Argentina and Latin America Situation of children with Congenital Hyperinsulinism in Argentina and Latin America Presentation Transcript

    • 4thCongenital HyperinsulinismInternational (CHI) EndocrineSociety MeetingJune 15-16, 2013Berkeley, California
    • Argentina Congenital Hyperinsulinismhttp://www.hicongenito.com.ar/Eduardo R. Guzmán, MD.Elizabeth Malament, Cellular and Molecular Biologist
    • ArgentinaArgentina‘s Health System‘s Health SystemTThe Argentine health system consists of three subsystems:he Argentine health system consists of three subsystems:1.1. Federal and State Public SectorFederal and State Public SectorApproximately 15 million people attend Public hospitals and carethis high demand. Saturation and overflow occurs. This results inlong delays to obtain a scheduled appointment and precludestimely care to the patient, as a follow-up.2.2. Worker Unions Medical AssistanceWorker Unions Medical AssistanceIt Provides medical care to approximately 50% of the population.It Provides medical care to approximately 50% of the population.3.3. Prepaid (Private) Medical SystemPrepaid (Private) Medical SystemIt is funded by the private voluntary contributions of its members,It is funded by the private voluntary contributions of its members,who belongs to middle and upper income.who belongs to middle and upper income.
    • Medical Doctors in the HealthMedical Doctors in the HealthSystem of ArgentinaSystem of ArgentinaArgentina is the second country in the worldArgentina is the second country in the worldwith the highest number of Medical Doctorswith the highest number of Medical Doctors..The poor quality of medical care in turn, reduces theThe poor quality of medical care in turn, reduces thepossibility that the doctor can make a properpossibility that the doctor can make a properdiagnosis, as well as having will or initiative to learndiagnosis, as well as having will or initiative to learnor train for a rare or infrequent disease.or train for a rare or infrequent disease.
    • There are two aspects afecting theThere are two aspects afecting thesituation of children with HI in Argentinasituation of children with HI in Argentina1)1) Medical aspectsMedical aspects: the disease is practically: the disease is practicallyunknown for argentinian doctors;unknown for argentinian doctors;diagnostics are discovered late and medicaldiagnostics are discovered late and medicaltreatments are inadequate.treatments are inadequate.2)2) Family aspectsFamily aspects: these are related to: these are related toeconomic difficulties and also to the culturaleconomic difficulties and also to the culturallevel of the families.level of the families.
    • 1.1. Medical aspectsMedical aspectsWhat do we mean by insufficient medical knowledge ofthe disease?I. As Medical Doctors do not know or have noexperience with the disease, they cannot suspectthe pathology through the symptoms.II. Once the diagnostic of Congenital hyper-insulinism (HI) is determined, they do not giveimportance to the molecular genetic study.III. The available medicines and their target is notunderstood.
    • 2.2. Family aspectsFamily aspectsI. Economical impossibility of acquiring medicinesand medical supplies.II. A genetic study for HI is not practiced inArgentina. It is very expensive to do it in a foreigncountry, and shipment of biological samplesrequires authorization from the Ministry of Health,which is often a cumbersome process.
    • 2.2. Family aspectsFamily aspectsIII. Impossibility to access the Pet Scaneconomically and curative surgery is onlyperformed in specialized centers abroad.IV. Tremendous physical and psychologic stress ofthe family.
    • Geographycal Distribution of some cases of CongenitalGeographycal Distribution of some cases of CongenitalHyperinsulinism in ArgentinaHyperinsulinism in ArgentinaSantiago del Estero (1case): Good response toDiazoxideBuenos Aires (7 cases):2 cases SUR1 focalscured3 cases SUR1 diffuse (1case diabetic)1 case de HI/HA1 case; good response toDiazoxideSan Juan (1 case):Good response toDiazoxideCórdoba (2 cases):1 case SUR.1;surgery; necrotizingenterocolitis (NEC);neurological damage;1 case without geneticstudy; good responseto Diazoxide
    • HI Latin America report of 13 casesHI Latin America report of 13 casesArgentina: 3 casesVenezuela: 1 caseParaguay: 1 caseBrasil: 1 caseEcuador: 1 caseColombia: 1 caseMéxico: 1 casePerú: 1 caseGuatemala: 1 caseChile: 1 casePanamá: 1 case
    • En nombre de todos los niños latinos que padecenHiperinsulinismo Congénito:¡¡¡Thanks Dra. Diva D. De León-Crutchlow!!!!