Guest guest Posted January 14, 2002 Report Share Posted January 14, 2002 I'm totally confused. Whats all this about touching between the shoulder blades and bending your fingers back and touching the tops of your hands? I can do both and have always just thought I was double jointed. What else could this mean. I went to the Marfan's Syndrom link but no page I clicked on would come up. So now I am really concerned and wonder what may be wrong. What exactly is Marfan's Syndrom? Arizona > Yes, I can put my hands between my shoulder blades very easily. I do > remember someone saying that was odd. I can also bend my fingers WAY back, > almost touching the backs of my hands. Thanks for the link! My PE was > really bad, way worse than the one shown. I had one inch from sternum to > spine... > Sindea > driving Geoff nuts since 1994... > Arizona Hughes Please stop by and visit my Website listed below http://members.aol.com/artistdesigner/Arizona_Hughes/Page_1x.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2002 Report Share Posted January 14, 2002 Sindea, Thanks for the clarification. I do have many of the symptoms but not all. I am short and not thin so I guess I have nothing to worry about. Arizona > > Sorry to confuse you. The bending of fingers really far and such has to do > with the connective tissue relationship... below is the info I found... > It took the death of an Olympian to spotlight what was then a little-known > disease: Marfan's Syndrome. A three-time All-American and college standout, > Flo Hyman was the most influential women's volleyball player. In 1980, when > the U. S. boycotted the games, she was a spokeswoman for athletes and met > with Jimmy Carter. At the 1984 games in Los Angeles, the 31-year-old > athlete was the oldest female competing, and the 6-foot, 5-inch Hyman led > her team to a silver medal. She turned pro and played in Japan; but in > 1986, as she took her seat on the bench during a routine rotation and > cheered her teammates, she collapsed and died at the age of 33. The disease > also claimed the lives of two University of Maryland basketball players, > Owen Brown and Chris Patton, who died on the court. Roger Scott Blumenthal > M.D., director of the Henry Ciccarone Center for the Prevention of Heart > disease at the Johns Hopkins Medical Institutions, explains what Marfan's > Syndrome is, and why it is so dangerous. > > InteliHealth: What is Marfan's Syndrome? > Dr. Blumenthal: It's an abnormality involving connective tissue. People > with Marfan's Syndrome are more likely to develop enlargement of the aorta, > the main blood vessel leading from the heart to the rest of the body. It's > a genetic abnormality, and it's a dominant trait; if either of two parents > has it, then it's highly likely the child will have it. It occurs in one > out of every 10,000 people, and it occurs equally among males and females. > Approximately 5 percent of cases are new mutations, that is, they show up > in individuals with no family history of Marfan's. Several basketball > players have had it; and Flo Hyman, the Olympic volleyball player, died > from it. > > IH: What are the symptoms? > Dr. Blumenthal: The individuals who have it are quite tall and thin. They > may have deformities of the chest. They have long, spindly fingers, and > they may have a high arched palate. They have flat feet without an arch, > and they have flexible joints. They may have scoliosis - their backbone may > zigzag a bit. It affects the eye, and individuals with Marfan's may develop > retinal detachment or corneal flattening. Sometimes people who don't know > they have Marfan's Syndrome first see their doctor because they are > experiencing difficulty with their vision; and that can lead to a referral > to a cardiologist for an echocardiogram. Cardiovascular complications occur > in 30 to 60 percent of the cases. Often Marfan's is associated with mitral > valve prolapse. The symptoms and signs can be subtle, or they may be more > pronounced. Physicians will hear a click or a murmur when they listen to a > heart. An echocardiogram is used to measure the aorta for signs of > enlargement. > > IH: Does it make them better athletes, or are they just tall? > Dr. Blumenthal: They're often just very tall - but height is an advantage > in basketball and volleyball. People who have it range from average height > to seven feet tall. > > IH: Why is it so dangerous? > Dr. Blumenthal: If the aorta continues to enlarge and thin, it can be > life-threatening. The aorta can tear, and the aortic valve also can develop > leakiness. One study of 72 patients found that the average age of death was > 32. That's why when you hear about prominent athletes who die suddenly, > they often have Marfan's Syndrome. > > IH: Can it be treated? > Dr. Blumenthal: One treatment strategy is to use beta blockers. You also > can do an aortic valve replacement. It's a matter of judgment about when to > do surgery to replace the aortic valve. It's important to give genetic > counseling to individuals, too, since the offspring have a 50 percent > chance of having it. > > IH: If you know you have it, is it safe to play sports? > Dr. Blumenthal: That's always a big question. Some doctors will allow a > youngster to play sports as long as the aorta is below a certain size, and > they watch it with echocardiograms. But if it enlarges, then they restrict > physical activity. Whenever the aorta starts to dilate or get bigger, then > doctors recommend no sports. Exercise may tend to stretch the aorta even > more. > > IH: Is this something that the Olympic doctors know about? > Dr. Blumenthal: Doctors are very aware of it and look for signs of Marfan's > Syndrome. A number of college basketball programs now have physicals that > include echocardiograms. > > IH: I've heard that Abe Lincoln might have had this? Do you think that's > true? > Dr. Blumenthal: There's a long list of people who suspect that. There's no > way to know for sure, but he certainly was taller than the average person > of his day, and the physical descriptions of him fit the characteristics of > Marfan's syndrome. > > Copyright The Johns Hopkins University, 1998. All rights reserved. This > interview is not intended to provide advice on personal medical matters, > nor is it intended to be a substitute for consultation with a physician. > Arizona Hughes Please stop by and visit my Website listed below http://members.aol.com/artistdesigner/Arizona_Hughes/Page_1x.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2002 Report Share Posted January 14, 2002 Well, I had my dr's appt today. Although she gave me some things to worry about, I felt it was a good visit. All my blood work was normal and very good so far. She was highly impressed with my HDL counts she says. She is running extra tests to check all my hormone levels and for candida antibodies. She found a cyst under my tongue which she says is rare, and I am getting it checked out. She thinks it is probably just a cyst, but wants to be sure. Well, she says I have many of the marker's for Marfan's syndrome, so I go for an exhocardiogram next week. Do you all know anything about it? I had my pectus excavatum fixed 8 yrs ago, have the heart irregularities (those anxiety attack feelings), have long skinny fingers, am pretty tall and somehwat thin, have a wandering eye... I guess these are all markers and it is hereditary. Does anyone have any knowledge in this at all? Thanks! Sindea driving Geoff nuts since 1994... family site: http://sindea5.homestead.com/home.html Business sites: www.sindea.net http://www.homestead.com/sindeadoula/doulahome.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2002 Report Share Posted January 14, 2002 " sindea.horste " wrote: > Well, she says I have many of the marker's for Marfan's syndrome, so I go for an exhocardiogram next week. Do you all know anything about it? I had my pectus excavatum fixed 8 yrs ago, have the heart irregularities (those anxiety attack feelings), have long skinny fingers, am pretty tall and somehwat thin, have a wandering eye... I guess these are all markers and it is hereditary. Does anyone have any knowledge in this at all? Thanks! Hmm...I've heard of vitamin K deficiency being mentioned with connective tissue disorders. Can you put your hands up behind your back? (another sign of connective tissue disorder <g>) (I have a mild vitamin K deficiency -- I can put my hands up behind my shoulder blades, and didn't know this wasn't normal btw, and the skin on my belly was very stretched out from pregnancy, unfortunately... :/ ) See this lady's site for info: http://www.mindspring.com/~sandysimmons/links.html#pectus Mindy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2002 Report Share Posted January 14, 2002 Yes, I can put my hands between my shoulder blades very easily. I do remember someone saying that was odd. I can also bend my fingers WAY back, almost touching the backs of my hands. Thanks for the link! My PE was really bad, way worse than the one shown. I had one inch from sternum to spine... Sindea driving Geoff nuts since 1994... family site: http://sindea5.homestead.com/home.html Business sites: www.sindea.net http://www.homestead.com/sindeadoula/doulahome.html Hmm...I've heard of vitamin K deficiency being mentioned with connective tissue disorders. Can you put your hands up behind your back? (another sign of connective tissue disorder <g>) (I have a mild vitamin K deficiency -- I can put my hands up behind my shoulder blades, and didn't know this wasn't normal btw, and the skin on my belly was very stretched out from pregnancy, unfortunately... :/ ) See this lady's site for info: http://www.mindspring.com/~sandysimmons/links.html#pectus Mindy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2002 Report Share Posted January 15, 2002 Sorry to confuse you. The bending of fingers really far and such has to do with the connective tissue relationship... below is the info I found... It took the death of an Olympian to spotlight what was then a little-known disease: Marfan's Syndrome. A three-time All-American and college standout, Flo Hyman was the most influential women's volleyball player. In 1980, when the U. S. boycotted the games, she was a spokeswoman for athletes and met with Jimmy Carter. At the 1984 games in Los Angeles, the 31-year-old athlete was the oldest female competing, and the 6-foot, 5-inch Hyman led her team to a silver medal. She turned pro and played in Japan; but in 1986, as she took her seat on the bench during a routine rotation and cheered her teammates, she collapsed and died at the age of 33. The disease also claimed the lives of two University of Maryland basketball players, Owen Brown and Chris Patton, who died on the court. Roger Scott Blumenthal M.D., director of the Henry Ciccarone Center for the Prevention of Heart disease at the Johns Hopkins Medical Institutions, explains what Marfan's Syndrome is, and why it is so dangerous. InteliHealth: What is Marfan's Syndrome? Dr. Blumenthal: It's an abnormality involving connective tissue. People with Marfan's Syndrome are more likely to develop enlargement of the aorta, the main blood vessel leading from the heart to the rest of the body. It's a genetic abnormality, and it's a dominant trait; if either of two parents has it, then it's highly likely the child will have it. It occurs in one out of every 10,000 people, and it occurs equally among males and females. Approximately 5 percent of cases are new mutations, that is, they show up in individuals with no family history of Marfan's. Several basketball players have had it; and Flo Hyman, the Olympic volleyball player, died from it. IH: What are the symptoms? Dr. Blumenthal: The individuals who have it are quite tall and thin. They may have deformities of the chest. They have long, spindly fingers, and they may have a high arched palate. They have flat feet without an arch, and they have flexible joints. They may have scoliosis - their backbone may zigzag a bit. It affects the eye, and individuals with Marfan's may develop retinal detachment or corneal flattening. Sometimes people who don't know they have Marfan's Syndrome first see their doctor because they are experiencing difficulty with their vision; and that can lead to a referral to a cardiologist for an echocardiogram. Cardiovascular complications occur in 30 to 60 percent of the cases. Often Marfan's is associated with mitral valve prolapse. The symptoms and signs can be subtle, or they may be more pronounced. Physicians will hear a click or a murmur when they listen to a heart. An echocardiogram is used to measure the aorta for signs of enlargement. IH: Does it make them better athletes, or are they just tall? Dr. Blumenthal: They're often just very tall - but height is an advantage in basketball and volleyball. People who have it range from average height to seven feet tall. IH: Why is it so dangerous? Dr. Blumenthal: If the aorta continues to enlarge and thin, it can be life-threatening. The aorta can tear, and the aortic valve also can develop leakiness. One study of 72 patients found that the average age of death was 32. That's why when you hear about prominent athletes who die suddenly, they often have Marfan's Syndrome. IH: Can it be treated? Dr. Blumenthal: One treatment strategy is to use beta blockers. You also can do an aortic valve replacement. It's a matter of judgment about when to do surgery to replace the aortic valve. It's important to give genetic counseling to individuals, too, since the offspring have a 50 percent chance of having it. IH: If you know you have it, is it safe to play sports? Dr. Blumenthal: That's always a big question. Some doctors will allow a youngster to play sports as long as the aorta is below a certain size, and they watch it with echocardiograms. But if it enlarges, then they restrict physical activity. Whenever the aorta starts to dilate or get bigger, then doctors recommend no sports. Exercise may tend to stretch the aorta even more. IH: Is this something that the Olympic doctors know about? Dr. Blumenthal: Doctors are very aware of it and look for signs of Marfan's Syndrome. A number of college basketball programs now have physicals that include echocardiograms. IH: I've heard that Abe Lincoln might have had this? Do you think that's true? Dr. Blumenthal: There's a long list of people who suspect that. There's no way to know for sure, but he certainly was taller than the average person of his day, and the physical descriptions of him fit the characteristics of Marfan's syndrome. Copyright The Johns Hopkins University, 1998. All rights reserved. This interview is not intended to provide advice on personal medical matters, nor is it intended to be a substitute for consultation with a physician. Sindea driving Geoff nuts since 1994... family site: http://sindea5.homestead.com/home.html Business sites: www.sindea.net http://www.homestead.com/sindeadoula/doulahome.html I'm totally confused. Whats all this about touching between the shoulder blades and bending your fingers back and touching the tops of your hands? I can do both and have always just thought I was double jointed. What else could this mean. I went to the Marfan's Syndrom link but no page I clicked on would come up. So now I am really concerned and wonder what may be wrong. What exactly is Marfan's Syndrom? Arizona Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2002 Report Share Posted January 15, 2002 Glad I could help! It is a combination of things for me- the extreme pectus excavatum, being tall and thin (really skinny before kids), flexible fingers, wandering eye, mitral valve prolapse... Just found this though (makes me feel better, <g>): Unlike most genetic anomalies, Marfan's does not adversely affect intelligence. On the contrary, people with this anomaly are often bright and charismatic. Abraham Lincoln, Rachmaninoff, Niccolo Paganini, and Mary Queen of Scots are among those thought to have had Marfan's Syndrome Sindea driving Geoff nuts since 1994... family site: http://sindea5.homestead.com/home.html Business sites: www.sindea.net http://www.homestead.com/sindeadoula/doulahome.html Sindea, Thanks for the clarification. I do have many of the symptoms but not all. I am short and not thin so I guess I have nothing to worry about. Arizona Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2002 Report Share Posted January 15, 2002 Thanks for that site. I do have those symptoms and have wondered for years why my joints and hip and skin were always so tender....all my life they have been that way. I will continue to research it though before I bring it up to my doctor, who by now, thinks I am a nut case. Arizona > There's also Ehlers-Danos syndrome, which also has the flexible > fingers/joints thing, but not necessarily tall & skinny... > http://www.ednf.org for more info (personally I think it may be related to > liver problems on account of not being able to process the skin & joint > vitamins (E, A, > K, D) but I dunno!!!) > > Mindy Arizona Hughes Please stop by and visit my Website listed below http://members.aol.com/artistdesigner/Arizona_Hughes/Page_1x.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2002 Report Share Posted January 15, 2002 " sindea.horste " wrote: > Glad I could help! It is a combination of things for me- the extreme pectus excavatum, being tall and thin (really skinny before kids), flexible fingers, wandering eye, mitral valve prolapse... Just found this though (makes me feel better, <g>): There's also Ehlers-Danos syndrome, which also has the flexible fingers/joints thing, but not necessarily tall & skinny... http://www.ednf.org for more info (personally I think it may be related to liver problems on account of not being able to process the skin & joint vitamins (E, A, K, D) but I dunno!!!) Mindy Quote Link to comment Share on other sites More sharing options...
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