There Must Be a Reason: My Daughter's Battle with Wegener's Granulomatosis

By Myrna Swart

Book Overview

Carol's gripping story begins 29 years ago when, as a teenager, she asks to have her nose surgically altered. But before plastic surgery can be performed, her world comes crashing down around her when... This description may be from another edition of this product.

• Format: Paperback
• Language: English
• ISBN: 0595470017
• ISBN13: 9780595470013
• Release Date: May 2008
• Publisher: iUniverse
• Length: 432 Pages
• Weight: 2.00 lbs.
• Dimensions: 1.0" x 6.0" x 9.0"

Customer Reviews

Must read

The reason why I am writing this information is because I just read the book There Must Be A Reason: My Daughter's Battle With Wegener's Granulomatosis. I suggest that anyone who has this disease or knows someone who has this disease should take the time and read this! If more people become knowledgeable about WG then Doctor's could diagnose patients early on in the game. I was lucky enough to push the Doctor's I had seen to get another opinion. It is very important to try and treat this disease early on with the proper medication. I was inspired by both Myrna and Carol Swart for the strength they had while going through chemotherapy. When reading through the book you realize how important it is to have a strong support system like Carol did. The emotions I had while reading about her experiences are like nothing I ever felt before. Some days I feel sorry for myself and wonder why I got this but then I see what she went through and how she remained positive and it gives me hope. Each day is different from the others. At such a young age I get frustrated because like all other woman I too want children of my own. When I read the part about Carol not having her menstrual cycle anymore due to the chemotherapy my heart broke for her. I literally had tears running down my face. Nobody knows what the future holds but after reading this book I have learned to think positive and not let this disease win. Carol shows the reader how to take action and not feel sorry for yourself. I find myself not thinking so much now of "why me" but how can I beat this. In this book you get the understanding of how this disease effects people that love and care about the patient. As a patient being sick isn't something that you want to discuss all the time and chances are that your family doesn't want to either. Patients dealing with this disease wake up with the pain and need a distraction. They don't want to talk about it all the time and let it consume their lives. Myrna writes that sometimes your family and friends just want to be there for you to help you in anyway. Sometimes they feel guilty because they are healthy and the one that they care about isn't. When you have a serious illness sometimes you can get frustrated when others complain about the common cold etc. Myrna has a way in her writing of letting you know that although WG patients deal with complications day in and day out you must realize that everyone else who has problems requires love, attention and a hug. Everyones pain is different and you cannot pass it off as nothing. I want to say THANK YOU to Myrna and Carol for taking the time to write this book. It opened my eyes to view this from another point of view and has inspired me. Since reading the book and finding out how they both participated in VF and creating the site, I have contacted the rep for my state and we are trying to organize a VF walk and other fund raising ideas. I am more motived then I was befor

Inspiration and Resource

This book written by Myrna Swart is a story of strength, tenacity and bravery. "There Must Be a Reason" is a mother's quest to learn what her daughter Carol suffered from and to find a way to alleviate her pain and find a cure. A well-written documentation of Carol's struggle to overcome the ravages of Wegeners Granulomatosis, a rare autoimmune disease, this book is an inspiration and incredible resource for patients and for caregivers of those suffering from rare, unpredictable and chronic illnesses. Despite the often debilitating symptoms, Carol strove to become a super achiever and make her life as normal as possible in every way. Written from the perspective of the patient and family it affords a clear view of the search for answers and of diagnostic and medical practices, both good and bad, as provided by health care professionals. A must read for not only patients and caregivers, but for physicians and health care providers as well, because Carol's story, in a way speaking for all of us and especially for those suffering from rare and chronic illness, identifies the need for understanding, patience, empathy and compassion in addition to the practice of pure medicine in the quest for comfort and cures. Support resources and instructions for starting support groups are also addressed.

What a book to connect with if you are sick..

I, too, am a Weggie (someone with Wegener's granulomatosis). I was diagnosed in Feb. of 2005, but was most likely suffering from it for more than 8 years prior. I have to thank Myrna and Carol for writing their story and sharing with so many of us. I connected from beginning all the way to the end. My mother is my caretaker, best friend and ally in the fight against WG. I was fairly young when WG started to attack myself and my life. Much like Carol, I tried to live a normal life (school, friends, work, travel), but eventually it became too hard to keep up appearances as a "normal" person. To know that Carol has faced what I'm going through head on and has made a life for herself (perhaps not the one she dreamed of as a young girl) is really inspirational to me. We share so many things in common down to having to live with our parents again, dads being sick, mom the rock that gets things done when we are too sick to do it, leaving a career we loved, pain and medications a daily routine, and trying to help others that are suffering from WG and all the side effects. I would recommend this book to anyone struggling with an illness that is unpredictable, anyone caring for someone sick for the long haul, or someone that knows a person struck with a vasculitis disease. Also, anyone having to take cytoxan, methotrexate, imuran or other chemos for long periods of time along with prednisone therapies. It really helped me realize that I'm not alone in my battles and that there are other people that mirror how I feel and think. It was like reading my own story and it helped to know that Carol has survived all these years; when you're in active WG you sometimes forget that there is a light at the end of the tunnel. I love how Myrna didn't paint a rosey picture of this disease. It's pretty much H E L L for those that have it and for those that love the Weggie. But........I admire the committment to living that the whole family has adopted. Finally, this book opened my eyes as to how hard things are on the caregiver. Sometimes, being sick, you become very selfish and feel cheated. Many times we take that out on the person that loves us most; our mothers or family members that are helping us. I encourage anyone that is suffering from a chronic illness to read this so you can monitor your angst and try not to take it out on the people helping you. My mom will be reading this next week. I can't wait for her to share her thoughts! Thank you to the entire Swart family.

There must be a reason

I read Myrna's book with awe for what she and her daughter Carol had gone through. As a Wegener's patient myself I am so thankful to have been diagnosed with this rare disease when there are better treatments and a little more awareness of it. I am so grateful to both Myrna and Carol for their struggle to organize what is now the Vasculitus Foundation which is a resource for people all over the world. The book is well written and gives the reader an appreciation for the emotions that family members and caregivers must have as well as the patient. I couldn't put it down until I had finished it. Well done!

Acting like an invalid can lead to becoming one. ~Myrna Swart~

This is a hard book to put down. Myrna writes in a way that you feel like you are going through, not only what she went through as a caregiver, but everything her daughter Carol went through! I felt like a fly on the wall! What a view I had during this entire journey! There were times throughout this book when I felt like I could actually step in front of Carol to protect her, wipe Myrna's tears, travel abroad with Dick so I could see the pyramids too, and bow to Carol's three brothers, who took care of their lil' sis. My brother could afford to take lessons from them! In fact, if Myrna and Carol are willing, I would like to trade in my brother for one of hers! (His wife comes with him for no additional charge!) This is a must-read book! It is so well-rounded that caregivers AND people living with a chronic disease can benefit from it. I learned. I laughed. I cried. I cringed. I applauded. Great job, Myrna and Carol! Both of you are so inspiring!