Those affected with MVPS/D have often been frustrated with traditional medical care. They have frequently felt isolated and abandoned. Physicians, too, have been frustrated because of the lack of adequate diagnostic testing, tools, and effective treatment. When confronted with repetitive complaints by patients, doctors often respond with simple avoidance and patronizing comments, such as, "It's all in your head." Patients who have encountered these kinds of responses from their doctors often fall into an abyss of hopelessness, fear, and depression. It is our hope that "The Society for MVPS" will help you have a better understanding of this disorder so that you can live the quality of life you deserve.
The Society for MVP Syndrome is a nonprofit, charitable organization.
(Listed as a resource in the Harvard Health Letter.)
About Us
The founders of The Society for MVP Syndrome are Jim Durante, Bonnie Durante, and Cheryl Durante Bihun. As fellow sufferers, we are all passionately dedicated to spreading the word and educating people about Mitral Valve Prolapse Syndrome and Dysautonomia. Before starting our nonprofit, charitable organization we traveled over 30,000 miles educating ourselves about this syndrome. Our support group was formed in September of 1991, and shortly after that we began publishing a bimonthly newsletter entitled, "And The Beat Goes On." We have helped to organize, and have spoken at, many MVPS seminars in Illinois. Please contact us for future support group dates. We encourage MVPS patients and their families to attend.
Our one and only goal since 1991, which remains the same to this day, is to reach out to all of those who have suffered in silence knowing they were somehow different, and yet unable to figure out why.
MVP affects about 15 to 25 percent of the population. Forty percent of these people have Dysautonomia (MVP Syndrome). Seventy percent of patients have depression. Only two percent of MVP patients have actual structural problems. At least 40 to 60 percent of MVPS patients suffer from panic attacks.
Treatment
Education: Becoming educated will reduce the unknown, thereby reducing the fear. Support groups, seminars, books, newsletters, and DVDs are very helpful.
Diet
Eliminate nervous system stimulants, such as caffeine and sugar. Alcohol is not usually tolerated well by MVPS patients. MVPS patients should drink 64 ounces of fluid per day; more in hot weather, to keep from dehydrating.
Exercise
Start an aerobic exercise program. Build up gradually to at least 30 minutes, five times a week.
Medication
Some medications that are used are beta-blockers, calcium channel blockers, anti-anxiety agents, antidepressants, anti-diarrheal and acid controllers. Avoid medications that contain stimulants, such as epinephrine and pseudoehedrine.
PMA
Positive mental attitude. As Lyn Frederickson says, "Without PMA it is difficult to have the emotional energy to begin, much less stick with, this treatment program."
FAQs
Q. Am I going to have a heart attack?
A. People with MVP have no more incident of heart attack than the normal population
Q. Am I going crazy?
A. No, you are not crazy, but rather you are living with MVP Syndrome, and the lack of information certainly can make you feel as if you are going crazy.
Q. Is a cardiologist the best doctor for me to see?
A. Not necessarily. Remember, except in very rare cases, this is not a serious heart condition. The best doctor to see is one who is compassionate, believes in, and has some understanding of Mitral Valve Prolapse Syndrome.
Q. I am ready to have valve replacement surgery, but my doctor says I don't need it. I'm tired of this anxiety, constant migraines, and chest pain.
A. Your doctor is right. Surgery will not get rid of your symptoms. Again, MVPS is not a heart condition, but rather a central nervous system imbalance.
Q. My echocardiogram was negative, but I have all the symptoms. What does this mean?
A. Approximately 40 to 50 percent of the time MVP does not show up on an echocardiogram. That does not mean you don't have MVPS. Just as important as the test itself is your family history.
Q. Will pregnancy hurt my MVP?
A. No, in fact, most MVP patients report that they feel much better during pregnancy. We think this is due to an increase in blood volume, secondary to hormonal changes brought about by the pregnancy.
Q. I had a panic attack ay my dentist's office after I received a shot of Novacaine. Why did this happen?
A. Novacaine contains a stimulant and can cause panic. MVPS patients should tell their dentists they have MVPS and ask for the novacaine that does NOT contain adrenaline.
Q. Am I more prone to "sudden death?"
A. People with mitral valve prolapse syndrome are no more prone to "sudden death" than the normal population. In fact, some studies show that people with MVPS are less likely to die suddenly.
Remember: This web site is not intended to take the place of your doctor. Only he/she knows your personal medical history.
Web site last updated June 15, 2009
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