The durantes of Illinois on their experience with mitral valve prolapse syndrome
In 1986 Bonnie Durante was diagnosed with mitral valve prolapse. She was not too surprised; her mother had the condition, as did Durante’s only sibling and all of his four children. Her doctor said it was nothing to worry about, so she put it out of her mind until 1988, when all three of her children were diagnosed with mitral valve prolapse syndrome. In their own words, here is the Durante family’s story of dealing with a medical condition that is truly a family affair.
As a mother who has MVP syndrome, I found it difficult to deal with the fact that my three children – Jimmy, Cheryl and Dawn – had inherited this dominant gene. Young adults now, they only found out a few years ago why their lives were such a struggle. We spent a great deal of time going to doctors and enduring many medical tests; two of them were even hospitalized as youngsters to try to identify why they had so many medical complaints and days absent from school. Of course, they never received a diagnosis. My heart broke when they were told they would just have to "tough it out" and get over their anxieties on their own. They were made to feel that somehow they were causing their own problems; that they were weak.
Some time after my children were diagnosed, the local news in Chicago did a health segment on MVPS. Lyn Frederickson was interviewed, and she talked about the Mitral Valve Prolapse Center of Alabama and her book. When I saw that report I began to realize that there was more to mitral valve prolapse than I originally thought, and that’s when we began our research.
Once we read Lyn’s wonderful book we were on our way to Birmingham. My husband, who was having a difficult time dealing with his whole family being sick, drove us there. It was an extremely positive visit. Everyone who works at the Center is warm and friendly, and many of them also suffer from MVPs They understood! We received a wealth of information, diets, exercise plans, and low doses of medication.
After years riddled with anxiety and panic we were able to start changing the course of our lives through education. I knew there were probably a lot of families going through the same thing, and I felt a need and obligation to share with them my personal story and what I had learned. My daughter Cheryl and I traveled about 30,000 miles across the country to MVPs seminars and support groups before we started our own support group; I recruited her to be a co-leader with me. Our first meeting was held in September of 1991.
Sixty people attended that first meeting, including a few doctors and hospital administrators. I fought back tears as I heard Cheryl speak to the attendees. She talked about how difficult she had thought MVPs was going to be to live with, but then the realization had dawned on her that she had in fact been living with it her entire life – so how bad could it be? She determined that a positive mental attitude was the best way to deal with this disorder. The next step was for her to admit that her anxieties, fears and phobias were the result of panic disorder and not just part of her personality makeup. Once she started working on conquering her fears, she started to see how "normal people" take life for granted. Cheryl turned MVPs into something positive.
Well, we’ve come a long way since that first meeting. My son, Jimmy, has joined our crusade, and our confidence has really grown. In 1993 we co-hosted the first MVPs seminar in Illinois; Dr. Phillip Watkins, Lyn Frederickson and Dr. Bob Hamilton, all from Birmingham, were our speakers, and some 600 people attended. We still have monthly support group meetings, and as far as I know we are the largest such group in the country, with a mailing list of about 5,000 people. We videotape what has now become our annual seminar and make those tapes available to the public for purchase. We also publish a bimonthly newsletter and maintain a Web site; we are here to support other people with MVPs in any way we can, even if it’s just being good listeners.
My life has completely changed for the better since finding out about MVP syndrome. I have spent a lot of time and energy to try to help others, and I truly believe I am succeeding. It’s been a lot of hard work and a great learning experience. I am frequently reminded of how worthwhile the effort has been when someone comes up to me and says, "You and your family have given me back my life."
Jim Durante’s Point of View
Jim Durante talks about dealing with mitral valve prolapse syndrome from the point of view of a husband and father not affected with the condition from which the rest of his family suffers.
First my wife complained about a racing heartbeat. Soon my three children were having the same problem. They talked about it so much to each other that I thought they were actually causing this problem by the power of suggestion!
However, more symptoms were about to surface; chest pain, migraines, insomnia, and panic attacks, to name but a few. Their physicians could find nothing wrong with them, and I am now ashamed to say that I thought they were becoming hypochondriacs. Needless to say, when they all finally got a diagnosis of mitral valve prolapse and then MVP syndrome, I was relieved.
I, like they, had no idea of what a complex disorder we were dealing with. I read all the educational materials they gave me to try to understand what they all were going through. I really thought I learned everything until my wife started receiving phone calls from other MVPs patients. I could not believe how many people were suffering from this syndrome and how much their lifestyles were affected.
I am so very proud of my family. They have accomplished so much and have helped hundreds, if not thousands, of people.
The Elk Grove Village, Ill., support group meets the third Tuesday of each month (no meeting in November or December) at 7 p.m. at Alexian Brothers Medical Center. For more information, contact:
Bonnie Durante
E-mail: Bonnie0107@aol.com
Phone: (630) 250-9327
Web Site: www.mitralvalveprolapse.com
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