TAILIEUCHUNG - UNDERSTANDING AND COPING WITH MITOCHONDRIAL DISEASE

Other aspects of maternal health present a mixed picture. While globally, the world has experienced dramatic declines in fertility – from a TFR of in 1960 to in 2001 -- still an estimated 134 million women who wish to space or limit their childbearing do not have access to effective contraception that would enable them to do so. 3 The result is approximately 70 to 80 million unintended pregnancies each year in developing countries alone (Singh, Darroch et al. 2004; WHO 2004). Meanwhile, violence continues to shatter the lives of women in every part of the. | Understanding and Coping with Mitochondrial Disease A guide for patients and parents from the Neuromuscular and Metabolic Centre McMaster Children s Hospital From the parents view . When we first heard that our daughter Alexis was diagnosed with Mitochondrial disease we really didn t know what it was. We also learned that not too many people had heard of it before. Our daughter had many tests performed to reach the diagnosis of Mitochondrial disease. So once we received the news we were actually glad to finally have some answers. No parent wants their child to be ill but we have learned to accept the disease and live with it on a day to day basis. We also learned that each person with Mitochondrial disease is affected differently by it. Alexis is severely affected by the disease so each day with her is special. Meeting other children with Mitochondrial disease and their families have become a great support for us. We can relate to their daily struggles and if we need advice they are there for us. My advice that I would give to others affected by Mitochondrial disease is to not give up. We can all fight this disease together. The hardest part sometimes is people not knowing enough about the disease. We really need to start educating people about it. Chris andStephanie Understanding and coping with Mitochondrial disease A guide for parents The health care team at the Neuromuscular and Neurometabolic Centre wrote this book to answer some common questions about Mitochondrial disease. We hope that you will find it helpful. During your child s care you will meet the members of our team. We will work closely with you and your child to meet your needs. Along the way we will give you information and support so that you can make informed decisions and take part in your child s care. We strive to provide a comfortable and caring environment for you and your family. Please feel free to talk with us about your child s condition care and any concerns that you may have. We .

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