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Shybushbaby
Super Moderator
Joined: 05 Mar 2009
Posts: 1131
Location: Marple, Cheshire
35843 Fibrillin
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 Posted: 10:47 am, Fri 12 Jun, 2009
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Jay
Welcome to the forum hun.
Everyone here is really friendly, if a little mad a times 
This is a support forum, but we dont spend all our time talking about problems associated with Marfans and other connective tissue disorders, we come here to chat about everyday things. Things that make us laugh and things that make us cry. They are all allowed. 
Look forward to hearing more about you. Are you married, do you have kids, are they affected by Marfans. Looking back through your family history, is there any hint of marfans or does it look like you are the first?
I look forward to reading all your answers.
JO. XXX
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Smile - tomorrow is another day
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Cuddles
Site Support
Joined: 04 Mar 2009
Posts: 1705
Location: east kent
54451 Fibrillin
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| Posted: 9:02 am, Fri 12 Jun, 2009
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| Darren wrote: |
Hi Jay,
Welcome to Our site. I posted Your facebook post on the above post - hope you don't mind!
I had my aortic root replaced at 14 years old, 24 years ago! I didn't have the valve replaced though. I'm on warfarin too because a few years ago I had a couple of mini strokes (TIAs).
Speak |
after the tone ??
soon
maybe
when i get a word in edgeways
which one was it Darren :P
Ok JAY welcome to the site mate
i am sure we will all get to know you better soon , and vice versa , but enjoy yourself here mate , i do
cuddles
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If there is something wrong , those who have the ability to take action , have the responsability to take action . |
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Polly
Super Moderator
Joined: 06 Mar 2009
Posts: 1546
Location: Cheshire
37620 Fibrillin
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| Posted: 8:17 am, Fri 12 Jun, 2009
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| Darren wrote: |
Hi Jay,
Welcome to Our site. I posted Your facebook post on the above post - hope you don't mind!
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Thanks for clearing that up Darren, I thought I was having a senior moment when I came back to this post!!
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www.a1schnauzer.web.officelive.com |
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Darren
Site Admin
Joined: 26 Feb 2009
Posts: 2143
Location: Cheshire, UK
52844 Fibrillin
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| Posted: 8:11 am, Fri 12 Jun, 2009
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Hi Jay,
Welcome to Our site. I posted Your facebook post on the above post - hope you don't mind!
I had my aortic root replaced at 14 years old, 24 years ago! I didn't have the valve replaced though. I'm on warfarin too because a few years ago I had a couple of mini strokes (TIAs).
Speak
_________________
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Polly
Super Moderator
Joined: 06 Mar 2009
Posts: 1546
Location: Cheshire
37620 Fibrillin
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| Posted: 7:58 am, Fri 12 Jun, 2009
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 Jay and welcome to the site. Your intro is short and sweet but none the less more than welcome!
If you get a chance tell us a bit more about yourself ie how long you have known you had Marfan etc. We are a friendly site and you will manage to get a word in side ways even though we do all talk a lot
Polly x
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www.a1schnauzer.web.officelive.com |
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JJay9
Expert Marf
Joined: 11 Jun 2009
Posts: 37
1223 Fibrillin
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| Posted: 11:35 pm, Thu 11 Jun, 2009
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I have Marfans and have a mechanical valve replacement op and also partially sighted due to the Marfans.
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Hi
I suffer with marfans, I was born with it. although it took a few years to find wot it was. I would just like to say to those with young children, who suffer with it, please get them checked out regular, as well as adults with it. As in 1996 i found out my aorta was stretching 5.5 cm out of place and need major heart op, which took place in Aug 97, and now on warfarin for life as i have a mechanical Valve, that was at the age of 28, so i am thankful to the dr and nurses at Broadgreen Hospital, Liverpool England, UK. Also not many people now i found out to late that if u suffer with marfans u are not supposed to play contact sports, as i did coz i was full of energy & did not now. Drs are now learning more about it than they ever did. You have to really push the drs to get tested for it as its not a 2 minute check up its over an hour. So press ur dr or nurse to get the test done Hope u do get them tested sooner than later. i am also partially sighted through marfans. |
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