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Canadian MPS Society) Is Pleased to Provide You with with This Resource Binder Entitled MPS IV: a Resource for Individuals and Families Living with MPS IV

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Canadian MPS Society) Is Pleased to Provide You with with This Resource Binder Entitled MPS IV: a Resource for Individuals and Families Living with MPS IV September 2016 Dear Friends, The Canadian Society for Mucopolysaccharide & Related Diseases Inc. (Canadian MPS Society) is pleased to provide you with with this resource binder entitled MPS IV: A resource for individuals and families living with MPS IV. The resource binder is designed to give you a reliable, comprehensive source of information on the symptoms and treatment of MPS IV, also known as Morquio syn- drome. It also provides space for you to record your appointments or concerns, making it easier for you to track your own unique experiences and to share them with others. On July 2, 2014, VIMIZIM® (elosulfase alfa) was approved by Health Canada for the treatment of MPS IVA. Since approval, a 52 week study of the safety of VIMIZIM in patients under 5 years of age has been completed. In this study, 15 paediatric patients under 5 years of age were treated with 2.0 mg/kg of VIMIZIM once per week resulting in reduction of urinary glycosaminoglycan levels. Side effects of treatment were similar in this study of patients less than 5 years of age to the side effects experienced in other studies of patients older than 5 years of age Based on the results of this study, VIMIZIM was approved for all ages on March 24, 2016. The product monograph recommends that treatment with VIMIZIM be initiated as early as possible, before the appearance of non-reversible symptoms of MPS IVA. The enclosed section on treatment options includes important updates about this enzyme replacement therapy (ERT) with VIMIZIM. You may wish to discuss this treatment with your doctor. We encourage you to ask your doctors for copies of your medical reports and evaluations and include them in your binder. Having all this information in one place may make it easier to answer questions from the various specialists you will likely see. We hope this MPS IV resource binder is a useful and beneficial tool for your family. If you have comments or suggestions on how we might improve our resources, please contact us at anytime. Sincerely, Kim Angel Executive Director Mucopolysaccharidosis IV 2 A resource for individuals and families living with MPS IV Disclaimer Mucopolysaccharidosis (MPS) IVA and IVB are two separate and distinct diseases. Although there are similarities, the differences between the two may be significant, especially with regards to treatment options such as enzyme replacement therapy (ERT), which is now available for MPS IVA but not MPS IVB. Many publications about MPS IVA have recently become available due to research into ERT. The following sections of your MPS IV binder have been updated based on these recent publications. New content has been indicated with a yellow box around the content, such as the yellow box that appears around this disclaimer section. This binder is a resource designed to support people with MPS IV understand their disease and its management. While the updates may be informative for all people with MPS IV, not all information will be relevant to people with MPS IVB, especially the updates to the treatment section. You should discuss the information contained in this binder with your doctor to deter- mine how it impacts your personal disease management and treatment. 3 Mucopolysaccharidosis IV 4 A resource for individuals and families living with MPS IV Contents Anesthesia considerations Overview 1 Mucopolysaccharidosis IV (MPS IV) What is anesthesia? 1 What is MPS IV disease? 1 Normal procedure for general anesthesia 2 How is MPS IV related to other MPS What is different for individuals with MPS IV? 2 syndromes? 2 The impact of underlying symptoms 2 How common is MPS IV? 2 Potential risks and complications 3 How do people inherit MPS IV? 2 What can be done to reduce the risks? 3 Is it possible to predict the severity of MPS IV? 4 Assessing the risks prior to a procedure 3 Is it possible to predict lifespan? 5 Choosing and meeting the anesthesiologist 4 How is a diagnosis made? 5 What does the overall process look like? 5 An update on newborn screening 6 Preparation 5 Signs and symptoms of MPS IV and their In the operating room 6 management 7 Back in the recovery room 6 Overview 7 Conclusion 6 Gastrointestinal system 8 Physical appearance 9 Eyes 9 Living with MPS IV Overview 1 Ears 11 Getting organized 1 Brain and central nervous system (CNS) 14 MPS IV Journal 1 Musculoskeletal system 14 Emotional support 1 Respiratory system 18 Daily living with MPS IV 3 Heart and blood vessels 22 Talking with your family 4 Reduced endurance 24 Your immediate family 4 Pain and quality of life 25 Your extended family 7 Recommended schedule of assessments 26 Talking to doctors 8 Why it’s important to talk to your doctor 8 Treatment options Finding the right doctor 8 Overview 1 Preparing for your visit to the doctor 8 Importance of multidisciplinary care 1 Young adulthood ― a time of transition 10 Disease management and supportive care 1 Healthcare 10 Enzyme replacement therapy (ERT) 1 Life planning 10 Overview of ERT 1 Making new friends and dating 10 How VIMIZIMTM (elosulfase alfa) works 2 Networking 11 Safety and efficacy of VIMIZIM. 3 Education 11 Important safety information for VIMIZIM 4 Choosing a career 11 Serious warnings and precautions 4 Learning from others with MPS 12 Illnesses with fever or breathing problems 5 Talking to employers 12 Dosage and importance of regular treatment 7 For parents of children with MPS IV 12 Accessing VIMIZIM treatment 7 For individuals with MPS IV 13 Where can I get more information and help? 8 Talking to educators 14 The Canadian Society for Sources of support and information 14 Mucopolysaccharide & Related Diseases Inc 8 Resources from the Canadian MPS Society 14 Other organizations 8 Resources for adaptive living 14 Rare disease research 9 Websites 15 1 Mucopolysaccharidosis IV Educational strategies Information handouts Introduction 1 An overview of MPS IV for doctors 1 How schools work 1 An overview of MPS IV for teachers 9 Schools as organizations 1 Classroom handout 13 A teacher’s life 2 An overview of MPS IV for case managers and The role of parents 2 support workers 15 Relevant laws 2 An overview of MPS IV for employers 19 Planning for educational programs and Emergency medical services notification 23 supports 2 Educational needs: The big picture 2 Overall planning and monitoring considerations 2 Glossary Medical care needs 3 Classroom integration and social skills 3 Author acknowledgements Teacher education and support 3 Academic and career expectations 3 Updates Special services 3 Overview 3 Socialization 4 The individual education plan (IEP) 4 IEP goal setting 4 Strength-based planning – child 5 Strength-based planning – school 5 Preparing for the IEP meeting 6 Having a successful IEP meeting 6 Managing disagreement with the IEP 6 Monitoring progress with the IEP 7 Adaptive physical education 8 Assistive technology 8 Post-secondary education 9 Resources for more help 10 MPS IV journal Introduction 1 My portable medical summary 3 My medical team 5 Preparing for medical visits 7 Recommended assessments 9 Appointment log 10 Monitoring test log 11 Supportive care log 13 Medication log 15 Observation diary 17 Glossary of terms used in this journal 21 2 A resource for individuals and families living with MPS IV Mucopolysaccharidosis IV (MPS IV) Contents What is MPS IV disease? 1 How is MPS IV related to other MPS syndromes? 2 How common is MPS IV? 2 How do people inherit MPS IV? 2 Is it possible to predict the severity of MPS IV? 4 Is it possible to predict lifespan? 5 How is a diagnosis made? 5 An update on newborn screening 6 Signs and symptoms of MPS IV and their management 7 Overview 7 Gastrointestinal system 8 Physical appearance 9 Eyes 9 Ears 11 Brain and central nervous system (CNS) 14 Musculoskeletal system 14 Respiratory system 18 Heart and blood vessels 22 Reduced endurance 24 Pain and quality of life 25 Recommended schedule of assessments 26 i Mucopolysaccharidosis IV ii A resource for individuals and families living with MPS IV Mucopolysaccharidosis GAGs, previously called mucopolysaccharides, are long chains of sugar molecules joined together, and are located mostly on the outside IV (MPS IV) surface of cells. The body uses them in the build- ing of bones, cartilage, skin, tendons, and many What is MPS IV disease? other tissues in the body. GAGs form part of Mucopolysaccharidosis IV (MPS IV; the structure of the body and also give the body pronounced mew·ko·pol·ee·sak·ah·ri·doh·sis some of the special features that make it work. four) is a rare genetic disorder that affects many For example, the slippery, gooey joint fluid that body systems and may lead to the damage of lubricates your joints contains GAGs. The rub- different body organs such as the bones, joints, bery cartilage in your joints is another example. and heart. MPS IV is also known as Morquio All tissues have some of this substance as a nor- syndrome. There are two types of MPS IV. mal part of their structure. However, individuals MPS IVA is caused by a defect in the gene with MPS IV have too great an amount of GAGs that instructs the body to make the enzyme in their body. Mucopolysaccharidosis IV (MPS IV) is a rare genetic disorder that affects many body systems and may lead to damage of body organs. N-acetylgalactosamine-6-sulfatase (GALNS, To understand how GAGs accumulate and cause pronounced en-a·see·tyl·ga·lak·tose·amine- MPS IV, it is important to understand that in the six-sul·fate sul·fa·tace), which is also called course of normal life, there is a continuous pro- galactosamine-6-sulfatase.
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