Just Diagnosed with Marfan Syndrome...

  • Posted by a hidden member.
    Log in to view his profile

    May 17, 2009 4:52 PM GMT
    I was just diagnosed with Marfan Syndrome on friday, which is a connective tissue genetic mutation. Just wondering if anyone else has Marfan's?

    Heres a website if you want to read about

    http://www.medicinenet.com/marfan_syndrome/article.htm
  • Posted by a hidden member.
    Log in to view his profile

    May 17, 2009 7:59 PM GMT
    Sorry to hear of your diagnosis. I'm not familiar with it at all, but reading thru the article it doesn't sound fun. But at least it appears that there are treatment options for you, which is a positive thing. A gorgeous man like you deserves a long and prosperous life.
  • Posted by a hidden member.
    Log in to view his profile

    May 17, 2009 8:02 PM GMT
    Surfer, sorry to hear about this. Nothing you could have done to prevent as it is inheritable. After reading the info through the link you gave us, I am still not sure whether you should be alarmed or ok with it, particularly the heart and blood arteries that may be affected. Best of luck, guy and of course, keep us informed and up to date. icon_biggrin.gif
  • Posted by a hidden member.
    Log in to view his profile

    May 17, 2009 9:19 PM GMT
    Bummer ... to say the least!

    I see that link says that nutrition is very important to fight this disease and maintain healthy connective tissue as best you can...

    Can you tell me which foods promote collagen?

    Collagen is classified as part of our body's connective tissue. Connective tissue is found virtually everywhere in the body. Our bones and skin are composed primarily from connective tissue, but it's found everywhere, in virtually all of our organs. It's the job of connective tissue to hold things together, to protect other tissue, and provide our body with support. Our tendons and ligaments are all connective tissue structures.

    Collagen is one type of fiber found within connective tissue. Collagen fibers are made from protein, and they are somewhat unusual in having large amounts of two amino acids, called hydroxylysine and hydroxyproline. These two amino acids seem to be important for formation of all types of collagen and are needed to provide the different collagen types with their appropriate amount of strength and flexibility.

    Unfortunately, we haven't seen any research studies to support the addition of high lysine or high proline foods as a way of promoting collagen formation. Nonetheless, it would seem logical for consumption of foods high in lysine and proline to be potentially helpful in collagen support. Animal foods are the primary source of both amino acids, and all of the World's Healthiest Foods choices involving animal products would be your best options here. We have seen far more research on the lysine content of food than the proline content of food.

    With respect to proline, egg whites appear to be an especially good source of proline from amongst the animal foods. And we've found one important exception to the animal versus plant proline rule - wheat germ. This plant-based component has much more proline than would normally be expected from a plant food.

    Read the rest ...http://whfoods.com/genpage.php?tname=fightdz&dbid=6#discussion



    and that bones are among the tissues affected....so drink your milk!
    More Help for Bone Health

    The vitamin K provided by cow's milk is also important for maintaining strong bones. Vitamin K1 activates osteocalcin, the major non-collagen protein in bone. Osteocalcin anchors calcium molecules inside of the bone. Therefore, without enough vitamin K1, osteocalcin levels are inadequate, and bone mineralization is impaired. A cup of cow's milk provides 12.2% of the daily value for vitamin K.

    It's not just its calcium and vitamin K that makes milk a bone-friendly food, cow's milk and fermented milk products such as yogurt also contain lactoferrin, an iron-binding protein that boosts the growth and activity of osteoblasts (the cells that build bone).

    Not only does lactoferrin increase osteoblast differentiation, it also reduces the rate at which these cells die by up to 50-70%, and decreases the formation of osteoclasts (the cells responsible for breaking down bone) thus helping to prevent or reverse osteoporosis. In addition, lactoferrin also increases the proliferation of chrondocytes, the cells that build cartilage. For building bone, enjoying both milk and yogurt seems a good idea since lactoferrin's effects were found to be dose-dependent, stimulating an up to a 5-fold increase in osteoblasts at higher doses.

    http://whfoods.com/genpage.php?tname=foodspice&dbid=130
  • Posted by a hidden member.
    Log in to view his profile

    May 17, 2009 9:25 PM GMT
    Both myself and my brother were suspected of having Marfans. Both of our arm spans are longer than our height, we have slight cardiac irregularites, and have pectus excavatums. No real health problems though, what brought upon your diagnosis?
  • Posted by a hidden member.
    Log in to view his profile

    May 17, 2009 9:50 PM GMT
    afkaway saidBoth myself and my brother were suspected of having Marfans. Both of our arm spans are longer than our height, we have slight cardiac irregularites, and have pectus excavatums. No real health problems though, what brought upon your diagnosis?


    I was in at the doctors a few months ago for mono, and he asked If I knew what marfan's was. I had no clue what he was talking about lol He sent me into a cardiologist and geneticist since my arm span is longer then my height (by only an inch or two though...), I'm 6'1" when the rest of my family is 5'5" or shorter, i have somewhat longer fingers, I tend to have pain on the left side of my chest alot. So they ran some tests and found I have marfan's

    I was looking online and found out Michael Phelps has been tested for Marfans, and Jonathan Larson (creator of RENT: The musical) had marfans and that is what caused his death...

    This is just another one of lifes obstacles and I'm not going to let it bring me down!icon_smile.gif
  • Posted by a hidden member.
    Log in to view his profile

    May 17, 2009 9:53 PM GMT
    Good for you surfer, best attitude and armor in the world for this.
  • Posted by a hidden member.
    Log in to view his profile

    May 17, 2009 11:16 PM GMT
    Sorry to hear about your illness. I know several individuals with Marfan's and they are all doing well. They have regular echocardiograms to monitor the size of the aorta and check the heart valves.
    Several years ago I gave a rather dry and technical lecture about Marfan's. To make it more interesting, I discussed some of the famous people that may have had Marfans. Marfans positively influenced some of their lives. The long fingers helped musicians. Being tall helped with basketball and volleyball.

    Abraham Lincoln
    Vincent Schiavelli, actor
    Jonathan Larson, Tony Award-winning playwright (Rent)
    Flo Hyman, captain, U.S. Olympic Volleyball team, 1984 (silver medalist)
    Chris Patton, college basketball player (University of Maryland)
    Akhenaten, Egyptian pharaoh, who was possibly the father of King Tut
    Charles de Gaulle...President of France
    Sergei Rachmaninoff..composer and finest pianist of his era
    Niccolò Paganini...possibly the greatest violinist of all time..He had exceptionally long fingers and was capable of playing three octaves across four strings in a hand span, a feat that is still considered impossible by today's standards
    Mary Queen of Scots
    John Tavener, composer
    Pauline de Rothschild, fashion designer, writer, tastemaker
    (possibly) Johnny Appleseed
    (possibly) Peter Crouch, England and Liverpool footballer
    Joey Ramone, singer

    Keep your positive attitude
  • bobrusso

    Posts: 18

    May 17, 2009 11:34 PM GMT
    My 12 year old daughter has Marfan's. The National Marfan's Assn. is having it's yearly meeting the weekend of Aug 8th, at the Mayo Clinic in Rochester Minn. If you or your family can attend, you will have the opportunity to attend many sessions by specialists in various areas dealing with Marfan's. My daughter is participating in a study about different blood pressure medicine, and which ones work best in fighting the effects of Marfan's. The Natl. Marfan's website will give you the best, unbiased information that I have found. My best to you and your family.

    Peace 2 U

    Bob
  • Posted by a hidden member.
    Log in to view his profile

    May 17, 2009 11:39 PM GMT
    Sometimes, when you get some lemons, you make lemonade.

    Logan / flex89 has lived with me for a year. He has type 1 diabetes, so, we made lemonade. You just keep making lemonade.
  • Posted by a hidden member.
    Log in to view his profile

    May 18, 2009 1:16 AM GMT
    surferdude1101 said

    I was looking online and found out Michael Phelps has been tested for Marfans, and Jonathan Larson (creator of RENT: The musical) had marfans and that is what caused his death...


    What happened to Jonathan Larson is not going to happen to you. Larson was never diagnosed with Marfans while alive. He never had echocardiograms to monitor aortic size. If he would have had an echocardiogram, the aneurysm would have been found and surgically corrected. There are thousands of people with undiagnosed Marfans. These individuals run the risk of developing a silent aortic aneurysm which might rupture. Not all individuals with Marfans develop aneurysms. You are going to be followed with echocardiograms to make certain that an aneurysm never develops. Consider yourself fortunate to be diagnosed before any problems developed.

    Michael Phelps does have Marfans. He has his aorta tested yearly at John Hopkins. His long arms and joint flexibility has helped his swimming.
    Osama bin Laden also has Marfansicon_eek.gif

  • Posted by a hidden member.
    Log in to view his profile

    May 18, 2009 8:25 AM GMT
    surferdude1101 said
    afkaway saidBoth myself and my brother were suspected of having Marfans. Both of our arm spans are longer than our height, we have slight cardiac irregularites, and have pectus excavatums. No real health problems though, what brought upon your diagnosis?


    I was in at the doctors a few months ago for mono, and he asked If I knew what marfan's was. I had no clue what he was talking about lol He sent me into a cardiologist and geneticist since my arm span is longer then my height (by only an inch or two though...), I'm 6'1" when the rest of my family is 5'5" or shorter, i have somewhat longer fingers, I tend to have pain on the left side of my chest alot. So they ran some tests and found I have marfan's

    I was looking online and found out Michael Phelps has been tested for Marfans, and Jonathan Larson (creator of RENT: The musical) had marfans and that is what caused his death...

    This is just another one of lifes obstacles and I'm not going to let it bring me down!icon_smile.gif


    sorry to hear that. I guess that the diagnosis has been confirmed by molecular genetics. Anyways, I think that some guys have already posted which kind of exams/check-ups you have to get regularly. Most important are the cardiovascular check-ups.
    However, symptoms in Marfan syndrome patients vary a lot (so called 'reduced penetrance'). so u might be lucky and will only have milder symptoms and will never develop all the other complications.
    Good luck and take care
  • cacti

    Posts: 273

    May 18, 2009 8:54 AM GMT
    Hey best of luck to you, surferdude. Love your attitude!

    I am intrigued, as I have never heard of Marfan Syndrome before. My interest piqued especially after the mention of disproportionate arm span- I have very lanky arms. A good 3 inches longer span than my height! I also have an abnormal sternum(indented AND protruding, which was much more obvious when I was super skinny), flat feet, and myopic eyes.

    Still, I am not one to attempt internet diagnosis, and I have had a fairly squeeky clean medical history with no other reason to believe anything is wrong with me. Since I now have group insurance, I may ask my doctor about it when I get one set up.
  • Posted by a hidden member.
    Log in to view his profile

    May 19, 2009 1:02 PM GMT
    Sorry to hear about that Surfy, but now that you know at least you can do stuff to look after yourself. It´s ALWAYS better to know and then do something about it than to be in denial/ignorance

  • Posted by a hidden member.
    Log in to view his profile

    May 21, 2009 3:57 PM GMT
    cacti saidHey best of luck to you, surferdude. Love your attitude!

    I am intrigued, as I have never heard of Marfan Syndrome before. My interest piqued especially after the mention of disproportionate arm span- I have very lanky arms. A good 3 inches longer span than my height! I also have an abnormal sternum(indented AND protruding, which was much more obvious when I was super skinny), flat feet, and myopic eyes.

    Still, I am not one to attempt internet diagnosis, and I have had a fairly squeeky clean medical history with no other reason to believe anything is wrong with me. Since I now have group insurance, I may ask my doctor about it when I get one set up.


    Same here. Some of those symptoms suspiciously mirrors some of my ailments. I'm also taller than almost all of my relatives (though my brother is taller than me) and I have slender fingers and long arms and legs, though I haven't really measured it against my height. I have stretch marks in the weird places (the small of my back, behind my knees), I have flat feet, and I'm asthmatic.

    Also. most worrying of all, I have an uncle who was crippled in his 30's. For apparently no reason at all. His legs just gave way.

    Sadly I don't really think our doctors are capable of diagnosing something like this here, I would probably have a full physical once I'm out of this country anyway, heh. And not going to worry about it. icon_razz.gif So yeah, you're lucky it's diagnosed at all. And I don't see any problem with it once it's diagnosed, as long as you take the proper precautions and treatments. icon_smile.gif
  • Posted by a hidden member.
    Log in to view his profile

    Feb 19, 2011 8:07 PM GMT
    Yes. Also usually tall, long limbs, and vision problems. There's a heart defect.
    May have apnea.