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Marfan Syndrome Support Group
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05/11/2008 01:24
PainfulHappiness2308
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 hi all. im Jessie, 20, and was diagnosed with Marfan Syndrome when i was 10 years old. i suffer from aches and pains pretty much on a daily basis, and most of the time feel like i am about 60. i dont have regular health insurance, just somethin from the state. those dr.'s seem not to really care whats wrong, just as long as ur alive. so for most of my information i look to the internet. im really hopin that i can find somethin here other than the usual to explain some of the things i go through.

God Bless all!


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05/11/2008 12:50
Tuffy
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 Hi Jessie: You said that you suffer from aches and pains on a daily basis? To my knowledge, this is not something that would be connected with Marfans? Sounds more like Fibromyalgia Disease, but I am NOT suggesting you have that, and I am far from being a doctor!! Please anyone, if I am wrong on this, I welcome correction. My Marfans affects me ~ not in my heart, other than MVP, but moreso in the area of "Orthopaedics". (severe DDD)

Welcome again to this forum. Also...are you a 'member' of the NMF ~ National Marfan Foundation? If not, go to WWW.NMF.COM (I think thats the site name) This foundation has yearly conferences and a world of knowledge for you concerning your Marfans!

Sorry to hear that you have daily pain and feel like you are '60 yrs old', yet are only 20 yrs old!! I feel the same way ~ really old! Hope you are having a great day!

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05/11/2008 20:44
PainfulHappiness2308
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 the dr. just says that its part of Marfans seein how it affects the joints and all. i personally think hes a bit of a quack, thats y imma be changin dr.'s soon. i am gettin ready to go check out the fibromyalgia page u have told me about, hopefully that might explain it.

yeah, i am signed up with NMF, we get things from them in the mail. there r some things i have seen, but just havent had money to do them at the present time.

thanks a bunch for all of the information!

hope u have a great day as well.


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11/23/2008 20:26
Brenden
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 Hi Jessie, my name is Brenden, I have Marfan's too.I am 9 years old,how old were you when you were diagnosed?I'm sorry to hear about your joint pain, my knees hurt sometimes but I think it is becoz I'm growing.I 'm not too good on the computer,but my mom said it was a great idea to go this site so I could talk to other people who have Marfan's. I have had no replies yet, maybe you can write back.
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11/23/2008 20:58
PainfulHappiness2308
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 hi Brenden, i was around the same age u r, i was 10 when i was diagnosed. sry as well to hear about ur pains. i know how that is. i frequently get inflamation in my ankles, have bursitis in both shoulders as well as tendonitis in the right one. i have a nerve problem in both hips, something like meralgia paresthetica, prolly a lil off on the spelling, but its very painful. i think everyone with Marfans has a lot of aches and pains from a young age. if u have any questions, or things u arent sure about, i would be more than happy to hear any questions and try and answer them, or find an answer for u. stay positve and happy.

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11/24/2008 08:10
Brenden
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 THANKS for writing back to me!You were the first one to write back to me.I am so sorry that you have to go thru that PAIN evryday I wish I could make evrything better for you. Your friend Brenden,11,24,08
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