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Alone in My Universe: Struggling with an Orphan Disease in an Unsympathetic World

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Battling a chronic disease can often be a lonely and frustrating ordeal. It doesn't have to be. "Alone in My Universe, " compiled by Wayne Brown, presents a series of writings from patients suffering from acromegaly. Based on actual personal experiences, these narratives provide a primer of understanding for others dealing with this chronic, debilitating disease that affec Battling a chronic disease can often be a lonely and frustrating ordeal. It doesn't have to be. "Alone in My Universe, " compiled by Wayne Brown, presents a series of writings from patients suffering from acromegaly. Based on actual personal experiences, these narratives provide a primer of understanding for others dealing with this chronic, debilitating disease that affects many of the body's systems. This collaborative effort, written by real people touched by acromegaly, attempts to raise awareness of this low-profile disease. Each patient tells his or her story as it relates to the disease and its complications. Topics include the following: Handling pre-diagnosis frustration Dealing with fears of medical treatment and surgery Managing family issues and work issues Talking with children Managing negative energy Coping with good and bad days Living life each day With sympathy, empathy, and mutual support, "Alone in the Universe" shares the heartfelt stories of those suffering from acromegaly to show others that they are not alone in their battle."


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Battling a chronic disease can often be a lonely and frustrating ordeal. It doesn't have to be. "Alone in My Universe, " compiled by Wayne Brown, presents a series of writings from patients suffering from acromegaly. Based on actual personal experiences, these narratives provide a primer of understanding for others dealing with this chronic, debilitating disease that affec Battling a chronic disease can often be a lonely and frustrating ordeal. It doesn't have to be. "Alone in My Universe, " compiled by Wayne Brown, presents a series of writings from patients suffering from acromegaly. Based on actual personal experiences, these narratives provide a primer of understanding for others dealing with this chronic, debilitating disease that affects many of the body's systems. This collaborative effort, written by real people touched by acromegaly, attempts to raise awareness of this low-profile disease. Each patient tells his or her story as it relates to the disease and its complications. Topics include the following: Handling pre-diagnosis frustration Dealing with fears of medical treatment and surgery Managing family issues and work issues Talking with children Managing negative energy Coping with good and bad days Living life each day With sympathy, empathy, and mutual support, "Alone in the Universe" shares the heartfelt stories of those suffering from acromegaly to show others that they are not alone in their battle."

30 review for Alone in My Universe: Struggling with an Orphan Disease in an Unsympathetic World

  1. 4 out of 5

    Megan Gaston

    This book is a must read for anyone who has Acromegaly! I was diagnosed in November 2016 and I was able to identify with each and every story compiled in this book. At times I felt like I was reading my exact thoughts and feelings. This book covers everything from diagnosis to surgery to after. This disease often makes you feel alone and isolated, but reading these stories from other patients having Acromegaly helped reiterate the fact that I am not alone. I am also part of the Facebook group st This book is a must read for anyone who has Acromegaly! I was diagnosed in November 2016 and I was able to identify with each and every story compiled in this book. At times I felt like I was reading my exact thoughts and feelings. This book covers everything from diagnosis to surgery to after. This disease often makes you feel alone and isolated, but reading these stories from other patients having Acromegaly helped reiterate the fact that I am not alone. I am also part of the Facebook group started by Wayne Brown and it has been a great resource and huge encouragement to me in my Acromegaly journey. I hope that in the future this disease gains more recognition so that other patients don't have to suffer so long before they are diagnosed!

  2. 5 out of 5

    Jolanta

    This book was like my personal healing. I have been diagnosed with Acromegaly back in 2008 and was struggling coping with the disease. By reading this book, I felt, that I was really not alone, I find myself in every story shared and I knew, that these people shared the same pain. It was not easy to explain anyone what I was going trough mentaly and physically, but it's clearly explained in this book. If you are diagnosed with acromegaly and looking for answers or maybe would like to understand This book was like my personal healing. I have been diagnosed with Acromegaly back in 2008 and was struggling coping with the disease. By reading this book, I felt, that I was really not alone, I find myself in every story shared and I knew, that these people shared the same pain. It was not easy to explain anyone what I was going trough mentaly and physically, but it's clearly explained in this book. If you are diagnosed with acromegaly and looking for answers or maybe would like to understand what acromegaly is really about, I would highly recommend to read it.

  3. 4 out of 5

    A G

    I read this book as research for a novel. It was written by a fellow who has acromegaly. Generally I am a fiction reader but I found the stories in the book amazing and inspirational. This is a book about real people's experiences and it juxtaposes information from medical professionals. I'm probably going to revisit this book in 2013. I read this book as research for a novel. It was written by a fellow who has acromegaly. Generally I am a fiction reader but I found the stories in the book amazing and inspirational. This is a book about real people's experiences and it juxtaposes information from medical professionals. I'm probably going to revisit this book in 2013.

  4. 5 out of 5

    dianal. hargrove

  5. 4 out of 5

    Mary Helgren

  6. 4 out of 5

    Mary

  7. 4 out of 5

    Nina Foster

  8. 5 out of 5

    Shannon

  9. 4 out of 5

    Matias Sandra

  10. 5 out of 5

    Tracy Speelman

  11. 4 out of 5

    Christi

  12. 4 out of 5

    Jobin Hume

  13. 5 out of 5

    Tanya Urban Fantasy Freak

  14. 5 out of 5

    Kamie

  15. 4 out of 5

    Wayne Brown

  16. 5 out of 5

    Rayjan Koehler

  17. 4 out of 5

    Genevieve

  18. 4 out of 5

    Lesley

  19. 4 out of 5

    Heather

  20. 4 out of 5

    Peter Shipp

  21. 5 out of 5

    Ekaterina Materinskaya

  22. 4 out of 5

    Rochelle

  23. 4 out of 5

    Heather Stanton

  24. 4 out of 5

    Molly Mclaren

  25. 4 out of 5

    No

  26. 4 out of 5

    Alecia

  27. 4 out of 5

    Maserame Mokoka

  28. 5 out of 5

    Robbie Huston

  29. 4 out of 5

    Fezile Wetes

  30. 5 out of 5

    Rayjan Koehler

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