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The 2013, 2nd Revised Edition of this book was created by Marilyn Hair and her daughter Sarah Steele who is 28 years old. Table of Contents. 1. What is FOP? 2. How did I get FOP? 3. What does it do to your body? 4. Does FOP hurt? 5. Will it get worse? 6. What things could make my FOP get worse? 7. Are there things that can help FOP? 8.
She was born with a rare musculoskeletal disease, fibrodysplasia ossificans progressiva (FOP), and over the course of her life suffered from other illnesses as well. Toxic shock syndrome and respiratory failure claimed her life.
Mar 30, 2020 · Sarah Steele was a young woman who lived her whole life with a rare disabling condition, fibrodysplasia ossificans progressiva (FOP), and in a family that include religion professor, clergy woman, and two siblings.
- Bill Gaventa
- 2021
She was born with a rare musculoskeletal disease, fibrodysplasia ossificans progressiva (FOP), and over the course of her life suffered from other illnesses as well.
Questions and Answers for the Children. This guidebook was written by Marilyn Hair, who is mum to Sarah Steele who had FOP. Sadly, Sarah passed away in 2017. The book is aimed at children aged 7 -14, who either have FOP or perhaps have a sibling or close friend living with the condition.
Hair’s daughter, Sarah Steele, was three months old in 1985 when she was diagnosed with fibrodysplasia ossificans progressive, a debilitating disorder that causes bone to form in muscles, tendons, ligaments and other connective tissues.
Sarah passed away in Seattle on November 14, 2017, a few weeks before her 33rd birthday. Sarah was a graduate of Lake Washington High School (LWHS) in 2003 and Seattle Pacific University (SPU) in 2007. She was born with a rare musculoskeletal disease, fibro-dysplasia ossificans progressiva (FOP).
