IPA - International Pompe Association

A Dutch guideline for the treatment of scoliosis in neuromuscular diseases

Background: Children with neuromuscular disorders with a progressive muscle weakness such as Duchenne Muscular Dystrophy and Spinal Muscular Atrophy frequently develop a progressive scoliosis. A severe scoliosis compromises respiratory function and makes sitting more difficult. Spinal surgery is considered the primary treatment option for correcting severe scoliosis in neuromuscular disorders. Surgery in this population requires a multidisciplinary approach, careful planning, dedicated surgical procedures, and specialized after care.

Article from Ventilator Assisted Living

This is an article describing the treatment outcomes for two Pompe patients.

The Signs and Symptoms of Pompe Disease

This brochure is designed to help Pompe patients deal with the different issues that they might face. As of July 2010, the English version of the brochure has been updated to reflect that a treatment is now commercially available.

Getting The Right Care for Pompe Disease

This brochure lists down the resources in getting the right care for Pompe Disease. As of July 2010, the English version of the brochure has been updated to reflect that a treatment is now commercially available.

Adapting to Living with Pompe Disease

Information regarding ways, methods to adapt to a life with Pompe Disease.

Breathing Problems in Pompe Disease

Information regarding how to cope with breathing problems related to Pompe Disease. 

Nutrition and Dietary Therapy

Nutrition and dietary information to aide in helping manage Pompe Disease.

Exercise and Physical Therapy

Information on the proper exercise and physical therapy that is relevant to Pompe Disease patients.

Common Health Concerns

Information about the common health concerns that are a result of living with Pompe Disease. 

The Emotional Impact of Pompe Disease

Pompe Disease affects patients not only on the physical level but also emotionally. This file has information regarding common emotional issues that affect Pompe Disease patients.

Having Children When You Have Pompe Disease

Life doesn’t stop when you have Pompe Disease. Some patients would like to continue and to live as normally as they can. This includes having a family. This brochure has information regarding issues on having children if you have Pompe Disease.

Medical Progress In Pompe Disease

Information on the current state of treatment, therapies for Pompe Disease and where it’s headed. As of July 2010, the English version of the brochure has been updated to reflect that a treatment is now commercially available.

Resources for Learning More

Knowledge is important. This brochure lists down resources on learning more about Pompe Disease.

Acknowledgments

List of people of people who have contributed to putting these information together.

About Enzyme Replacement Therapy and Myozyme

Finding a Treating Physician

Indication, Effectiveness and Safety of Myozyme

Preparation, Administration and Monitoring of Myozyme

Treatment Precautions for Myozyme

Practical Considerations and Supportive Management for Treatment with Myozyme

The Cost of Myozyme

Pompe Patient Information Collection

Outcomes of Myozyme Treatment

August 2003

The Natural Course of Infantile Pompe’s Disease: 20 Original Cases Compared With 133 Cases From the Literature (Pediatrics, August 2003)

Abstract

Needle Fear

This is an brochure compiled by Genzyme in an effort to aid patients in overcoming their fear of needles, an integral part of the Myozyme infusion process.

Physician’s Guide to Pompe

This is a brochure created by the IPA and Genzyme to aid doctors in their understanding of Pompe Disease.

Teşekkür

Daha fazla bilgi edinme kaynakları

Myozyme tedavisinin sonuçları

Pompe hastaları için bilgi derlemesi

Myozyme’ın maliyeti

Myozyme ile tedavi için praktik konular ve destekleyici

Myozyme için tedavi önemleri

Myozyme’ın hazırlanması, uygulanması ve izlenmesi

Myozyme’ın kullanım alanı, etkililiği ve güvenliliği

Tedaviyi yürütecek bir hekim bulmak

Enzim yerine koyma tedavisi ve Myozyme hakkında

Agradecimientos

Fuentes de información complementarias

Resultados del tratamiento con Myozyme

Recopilación de información sobre los pacientes

El coste de Myozyme

Aspectos prácticos y consejos para abordar el tratamiento con Myozyme

Precauciones relativas al tratamiento con Myozyme

Preparación, administración y monitorización de Myozyme

Indicaciones, eficacia y seguridad de Myozyme

Cómo encontrar un médico que lleve tu caso

Información sobre la terapia de sustitución enzimática

Outcomes of Myozyme Treatment

Pompe Patient Information Collection

Cost of Myozyme

Treatment Precautions for Myozyme

Practical Considerations and Supportive Management for Treatment with Myozyme

Preparation, Administration and Monitoring of Myozyme

Indication, Safety and Efficacy of Myozyme

Finding a Treating Physician

Ringraziamenti

About Enzyme Replacement Therapy and Myozyme

Fonti d’informazione

I risultati del trattamento con il Myozyme

Raccolta dati relativi a pazienti affetti dalla malattia di Pompe

Il costo del Myozyme

Precauzioni nella terapia con il Myozyme

Considerazioni pratiche e gestione del sostegno durante la terapia con il Myozyme

Preparazione, somministrazione e monitoraggio del Myozyme

Indicazioni, efficacia e sicurezza del trattamento con il Myozyme

La ricerca del medico curante

La Terapia Enzimatica Sostitutiva e il Myozyme

Danksagungen

Weitere Informationsquellen

Ergebnisse der Behandlung mit Myozyme

Informationssammlungen über Morbus Pompe

Kosten von Myozyme

Praktische Überlegungen und Unterstützungsmaßnahmen bei der Behandlung mit Myozyme

Vorsichtsmaßnahmen bei der Behandlung mit Myozyme

Zubereitung, Verabreichung, und Überwachung der Myozyme

Indikation, Effektivität und Wirksamkeit von Myozyme

Wie finde ich einen Arzt für die Enzymersatztherapie

Enzymersatztherapie und Myozyme

Remerciements

Sources d’informations supplémentaires

Collecte d’informations sur les patients atteints de la maladie de Pompe

Résultats du traitement par Myozyme

Le coût de Myozyme

Considérations pratiques et mesures de soutien lors du traitement par Myozyme

Précautions lors du traitement par Myozyme

Préparation, administration et surveillance de Myozyme

Indication, efficacité et sécurité de Myozyme

Trouver un médecin traitant

À propos du traitement enzymatique substitutif et de Myozyme

Dankwoord

Bronnen voor meer informatie

Resultaten met de behandeling met Myozyme

Het verzamelen van Pompe patiënten informatie

De kosten van Myozyme

Praktische overwegingen en ondersteunende zorg bij de behandeling met Myozyme

Voorzorgsmaatregelen bij de behandeling met Myozyme

Bereiding, toediening en monitoring van Myozyme

Indicatie, effectiviteit en veiligheid van Myozyme

Het vinden van een behandelend arts