In 1987, Frannie Rose came down with an illness that appeared to be just like the flu -- but it never went away. While bothersome at first, she didn't think much about it. But within a matter of weeks, the illness became so debilitating she was almost entirely bedridden and could no longer work. At that point, Rose was diagnosed with Chronic Fatigue Syndrome, but knowing this was not an accurate diagnosis, she continued to seek answers from within the medical field ... for the next 10 years. Ultimately, through biopsies, blood work, monitoring her response to different medications and incredible perseverance, Rose discovered she had Systemic Mastocytosis, a disease which causes the release of too many mast cells, which in turn produce too many chemicals, thereby inducing a constant, natural drug-like state. Rose has now written a book called Fixing Frannie, chronicling her journey through the maze of our medical system. Focusing on the challenges of the system -- as well as the heroes within the system -- the book illustrates some of the problems that occur at the patient/doctor level. Fixing Frannie will be out this spring.
Why the book? Well, partly it's my first step back into life. But, also, I wanted to help others with chronic health problems. About 45 percent of the population in the U.S. has some sort of chronic illness. And our society pays a huge amount -- about $659 billion a year -- for chronic health care. If I can say anything to help people from a patient standpoint, I wanted to do that. It took a lot of persistence and perseverance and believing in myself and knowing that I am worth saving for me to go from one doctor to another and tell them, "Something is wrong with me." I am very glad, and lucky, to be able to tell my story.
Did you face many doctors who did not believe you? Oh, yes. Many told me there was nothing wrong with me. Many told me I should look outside of my body.
Was that the most frustrating part of the whole process? That, and the actual diagnosis part. It took 10 years to diagnose and during that process it was very frightening. I had a family and I had become so disabled I could no longer work. And I had no idea why, which lends a woman, especially in today's health care system, to a situation where she really begins to question herself.
How so? Women are treated in medical care differently than men are. For example, everybody is afraid when they are going through the diagnostic process, but instead of looked at as being afraid, women are often looked at as being anxious and depressed. [They're] sometimes taken less seriously and I think this leads many women to question themselves.
You mentioned problems at the doctor/patient level. What are some of those problems? Just being able to get time from medical people ... to sit down and diagnose ... I mean, to really sit down and do that is difficult. As a result I think sometimes patients feel lost in the system.
After your experience, do you have more faith or less faith in our current medical system? Actually, I think we have a wonderful system in that it does save lives. The research is amazing, especially given the amount of health problems constantly emerging. And I do credit the doctors for this. But I've learned that saving lives is not just about tests and medications. People also need to know they are cared for by their doctors. I learned this from two very wonderful doctors. They really were heroes. My story is about those heroes who helped save me.
What advice can you offer to those who may be currently battling a chronic illness or embroiled in the system? Perseverance and persistence. Really believing in yourself. Knowing that your life is worth saving. One year of your life may not mean a lot to someone else, but it is priceless to you.
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Squeaky wheels get the grease - the rest of you be damned.