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What Is FOP? a Guidebook for Families)

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What Is FOP? a Guidebook for Families) What is FOP? Fibrodysplasia Ossifi cans Progressiva A Guidebook for Families © International FOP Association (IFOPA) • Winter Springs, Florida Th ird Edition, 2009 Editor: Sharon Kantanie Medical Editors: Patricia L.R. Delai, M.D., Frederick S. Kaplan, M.D., Eileen M. Shore, Ph.D. ii r This book is dedicated to all of the families who live with FOP every day. iii About the cover The painting on the cover of this book is called ‘‘The Circle of Life.’’ I had a number of reasons for picking this title for my butterfly painting. The butterfly to me is a symbol of hope and new beginnings. It is a subject that everyone can relate to, and everyone has seen a butterfly. Showing the cycle of the monarch butterfly tells of the changes in life which also occur with FOP. I picked the detailed work of a butterfly in watercolor to show what can be done after my adapting to FOP. I was a right handed painter until two years ago when my right elbow locked, forcing me to now do most of my painting with my left hand. This painting was the first time I had painted an open-winged monarch butterfly using my left hand. I consider this one of the more difficult butterflies to paint. Through my artwork, I also want to show with my painting that people with FOP can have productive lives. It’s important to have a special interest such as painting is to me. Jack B. Sholund Bigfork, Minnesota 1995 (for the first edition of What is FOP? A Guidebook for Families) iv Contents Foreword ........................................................ xiv Introduction ................................................... xvi Special note for parents ............................. xviii Chapter 1 FOP: Just the basics ............................................................. 1 General overview ............................................................................... 1 Diagnosis ........................................................................................... 2 History of FOP .................................................................................. 2 How many people have FOP? ............................................................ 3 FOP bone and ‘‘normal’’ bone ........................................................... 3 How FOP affects muscles .................................................................. 3 P stands for progressive ...................................................................... 4 The search for answers------FOP research .............................................. 4 Chapter 2 Things to avoid and alternatives ..................................... 5 Intramuscular injections and immunizations ..................................... 5 Surgery .............................................................................................. 6 Falls ................................................................................................... 8 Fear ................................................................................................... 9 v Chapter 3 Flare-ups ...................................................................................... 10 What causes a flare-up? ..................................................................... 10 Forming bone .................................................................................... 10 Lumps and bumps ............................................................................. 11 FOP and pain .................................................................................... 12 Chapter 4 FOP and mobility .................................................................. 14 How FOP affects mobility ................................................................. 14 Different people are affected differently ............................................ 14 Can anything be done to help a person with FOP maintain mobility? ............................................................................. 15 Physical activities ............................................................................... 15 Getting around .................................................................................. 16 Chapter 5 The medical world .................................................................. 18 Introduction ....................................................................................... 18 Selecting a doctor ............................................................................... 18 Helping your doctor provide better care ............................................ 18 Ways to share medical information .................................................... 19 vi Chapter 6 Making FOP treatment decisions ................................... 22 Introduction ...................................................................................... 22 Yes, it’s a bit confusing ...................................................................... 23 Introduction to corticosteroids (prednisone) and anti-inflammatory medications .......................................................... 23 Prednisone ......................................................................................... 23 Alphabet soup------Cox-2 inhibitors and NSAIDS (Non-Steroidal Anti-Inflammatory Drugs) ........................................ 24 What are aminobiphosphonates and why could they be helpful in the treatment of FOP? (Pamidronate and Zoledronate) ......................................................... 26 The immune system and why montelukast (Singulair) might be helpful in treating FOP ..................................... 28 Muscle relaxants ................................................................................ 29 FOP and clinical drug trials .............................................................. 29 What to do in common flare-up situations ........................................ 29 The future of FOP treatment ............................................................. 30 Potential treatment considerations for flare-ups and injuries .............. 31 Chapter 7 Emergencies ............................................................................... 33 Evaluating an emergency ................................................................... 33 If surgery is needed ............................................................................ 34 How to handle other injuries ............................................................. 35 vii Chapter 8 Treating acute and chronic pain ...................................... 36 Introduction ...................................................................................... 36 Keep these things in mind ................................................................. 36 Available options and where to turn for help ..................................... 37 Pain relationships ............................................................................... 38 Complementary medicine .................................................................. 39 Pain diary ........................................................................................ 41 Conclusion ........................................................................................ 42 Chapter 9 Oral and dental concerns .................................................... 44 When does the jaw typically become affected? ................................... 44 Preventative dental care ..................................................................... 44 Eating ............................................................................................... 45 If there is a way to eat it… ................................................................ 45 Creating extra space .......................................................................... 48 Minimizing risk during dental procedures------getting a good start ....... 49 Minimizing risk during dental procedures------anesthesia ...................... 49 Minimizing risk during dental procedures------fixing the problem ........ 50 Orthodontics and FOP ...................................................................... 51 Where to turn for advice .................................................................... 51 A final note ........................................................................................ 52 viii Chapter 10 FOP and breathing ................................................................. 53 An overview ....................................................................................... 53 A study .............................................................................................. 53 When to consult a lung specialist ....................................................... 54 Pneumonia ........................................................................................ 55 Encouraging good breathing .............................................................. 56 Chapter 11 FOP and the flu ....................................................................... 57 Influenza ............................................................................................ 57 Increased risks for people with FOP who get the flu .......................... 57 Prevention is the best medicine .......................................................... 58 If you get sick ..................................................................................... 59 Chapter 12 Kidney stones ............................................................................ 60 What is a kidney stone? .....................................................................
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