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Im a teenager, and yes I have all three of these conditions. I have learned to live with my EDS and had the Nuss procedure to correct my pectus excavatum(thank god i did because my heart was so crushed it was almost unable to function). The only thing I really worry about is Marfan's syndrome. I know some things about it but I would like to learn more. Like the mortality rates, avergae lifespan of someone with it and treatment options for some of the things like aortic valve enlargement that comes with it. Anyhelp is greatly appreciated. Also if you have had/ do have any of these conditions please post a reply I like to share my experiences with it

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Hi honey! myself, and my 2 boys have EDS! My youngest son, has the most severe case of it though! The unusual thing is that each of us has different symptoms! My eldest has the enlarged aeorta! And they are just following him! I have done a lot of research on EDS and some on Marfans! And just know that as long as you are carefully monitored and that you have your yearly Cardiac MRI and are seen by a cardiologist, you will have the same lifespan as anyone without the syndrome! As you know both EDS and Marfans create problems with your heart! So do not drink anything to increase your heart rate - ESPECIALLY drinks loaded with sugar and caffeine! Do NOT smoke or take any accelerant! You have to work at remaining healthy, but this will have positive affects for you in the long term! Do mild activities - ESPECIALLY swimming! For you joints and your heart! If you live near a Childrens Hospital, ask about Hydro Therapy/Physio Therapy! It is exxtremely helpful for your joints and your heart! Get a flu shot also, this protects your heart through the flu season!

Another great thing to do for your over all health is yoga, and gentle stretching exercises! Learning to calm your mind and body, will help your mind NO END!! So look into as much gentle exercises as possible, but SWIMMING MUST be the main part of your health!

Good luck and health honey!
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Thanks! And I do live pretty close to a Children's Hospital, CHKD in Norfolk, and I plan on getting the seasonal flu and swinfe flu shot because they are doing them at my school. And i will be sure to ask my doctor about hydro therapy or Physio Therapy. Good luck to you all too
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Hello Skinny Teen,
I was born in 1963 with the classic Ehlers Danlos "concave chest". I had the pectus surgery in the mid 1970's and experienced pretty much a full recovery. I am now in my late 40's (pushing 50) and aside from having some mild respiratory issues have lived a full and wonderful life. I would recommend doing everything you want to do and just have fun. Don't worry about what you can not control. I have decided not to inquire further via genetic testing - but each person has to make that decision themselves. Thank goodness to the Doctors at the Johns Hopkins Hospital for the excellent surgery they did.
Kathleen
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It is important that you rule out Marfan, 12 of the 13 EDS and also LDS. If you contact Invitae Labs, you can get a form to hand your doctor for genetic testing. Don’t wait on a doctor to request this for you. Your health is too important. Any doctor can sign the form. There are three codes for those three items and they come in a set. So you request, in working to the lab, an insurance check be done prior to the laboratory submitting the bill to insurance. And if insurance won’t cover it, then you can pay cash $250, for the whole triple testing series. You need the testing to receive proper care. If all tests are negative, then the EDS diagnosis is correct, but it is the Hypermobile Ehlers Danlos and none others.
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