Customer Reviews

The Official Patient's Sourcebook on Marfan Syndrome

This source book spends far more time instructing the reader on a patient's legal rights with their health insurance company than it does on any discussion of the best methods available to diagnose aortic aneurysms. If a Marfan patient wants to know the differences between the various medical tests used to determine if aortic replacement surgery is necessary, they won't find it here. If they want to know which medical tests allow the doctor to view the entire aorta, not just the aortic root, they will have to find it in another book because it isn't covered here. There is absolutely no explanation of the benefits of an MRI versus a CT Scan or echocardiogram, nor are the actual symptoms experienced by patients when their aorta is about to burst and kill them ever discussed.

The book is written by a Medical Doctor who apparently expects Marfan patients to find a doctor and then place their total trust in that person, unencumbered by any knowledge to allow them to be sure they are receiving appropriate medical care. A patient suffering from any disease is much better equipped to battle it if they have as much knowledge as they can possibly obtain, which is why I purchased this book. I'm afraid I wasted my money, because this book provides very little substantive information about the diagnosis and treatment of aortic aneurysms in patients with Marfan Syndrome.