Marfan Syndrome Support forum

Happy Birthday Polly!

Bluenose — 12:02 am, Fri 30 Jul, 2010

Author: Bluenose

Posted: 12:02 am, Fri 30 Jul, 2010

Happy belated birthday Polly... hope you had a nice day

feeling really bad

meanvixen — 11:31 pm, Thu 29 Jul, 2010

Author: meanvixen

Posted: 11:31 pm, Thu 29 Jul, 2010

thanks everyone, my fingers are crossed that when the hospital appointment comes up they say she hasn't got it, she will get all the support from me through out, i think i'm taking it bad as i know how much i hurt with marfans and at the moment it makes me feel sick to the stomach thinking of her going through the pain

Hi everyone

june — 9:53 pm, Thu 29 Jul, 2010

Author: june

Posted: 9:53 pm, Thu 29 Jul, 2010

John where about in Northamptonshire do you live as i to am from Northamptonshire xx

update on foot situation your views very much needed

Cuddles — 8:06 pm, Thu 29 Jul, 2010

Author: Cuddles

Posted: 8:06 pm, Thu 29 Jul, 2010

Sending hugs hun xxxxxxx

herbal and homeopathic remedies

june — 9:54 pm, Tue 27 Jul, 2010

Author: june

Posted: 9:54 pm, Tue 27 Jul, 2010

Thanks I will give it a go & let you know how it works, love & hugs June xxxx

A Message from cghanima

cghanima — 7:02 pm, Tue 27 Jul, 2010

Author: cghanima

Posted: 7:02 pm, Tue 27 Jul, 2010

thanks guys

xx

Had a bad day? - Tea & Sympthy served Here

cghanima — 6:59 pm, Tue 27 Jul, 2010

Author: cghanima

Posted: 6:59 pm, Tue 27 Jul, 2010

pixi thats what we are here for

take care
xx

Coping with my mother's illness

cghanima — 6:57 pm, Tue 27 Jul, 2010

Author: cghanima

Posted: 6:57 pm, Tue 27 Jul, 2010

bergerac i remember watching them but havent seen them for ages glad youa re finding your escapism, mine is indiana jones acutlly watched cyrstal skull last night again great

xx

speech problems / swallowing problems

cmonnie — 12:15 pm, Tue 27 Jul, 2010

Author: cmonnie

Posted: 12:15 pm, Tue 27 Jul, 2010

hi, i dont have any probs with my ears, but iv been told my voice is very quiet, infact ppl have been telling me to speak up my whole life, im always being told to speak up on the phone, i have had times wr i feel like im choking too, like my airway is narrowd, never thought any of it was to do with marfans tho, just thought the other ppl wr a bit deaf, lol
my son has marfans, he is actually very load, u always know when he's around.

DWP sent form

cghanima — 6:35 pm, Mon 26 Jul, 2010

Author: cghanima

Posted: 6:35 pm, Mon 26 Jul, 2010

wildthing
my inbox is open anytime you need it, it does help to talk (or type)

hugs
xx

Hello everyone!

jackst1 — 12:49 pm, Mon 26 Jul, 2010

Author: jackst1

Posted: 12:49 pm, Mon 26 Jul, 2010

Thanks Darren, really appreciate it.

Glad you like the photos Rachel

Photography website in memory of a members friend

Cuddles — 10:58 am, Sun 25 Jul, 2010

Author: Cuddles

Posted: 10:58 am, Sun 25 Jul, 2010

I was looking for the "LIKE" button
Tim what you are doing is amazing and also shows the true friendship you had / shared .

A picture of my dogs

Polly — 9:34 am, Sun 25 Jul, 2010

Author: Polly

Posted: 9:34 am, Sun 25 Jul, 2010

They do have their moments of being good! The photographer was sat on the floor and I was stood to the side to get more of a profile angle. Since they were pups we have always use the "watch" command so usually when we say "watch" they will look at us.

FAQ

Rachel — 5:13 pm, Sat 24 Jul, 2010

Author: Rachel

Posted: 5:13 pm, Sat 24 Jul, 2010

great link and i think super website, give a lot of really valuable information. Did you know that we all have to be careful with herbal remedies? Im a big fan of them, now I need to find out more!

my best friend has terminal C

june — 3:32 pm, Sat 24 Jul, 2010

Author: june

Posted: 3:32 pm, Sat 24 Jul, 2010

Thank you for your kind thoughts xx

Acid Reflux?

Cuddles — 1:07 pm, Sat 24 Jul, 2010

Author: Cuddles

Posted: 1:07 pm, Sat 24 Jul, 2010

I hope things get sorted out soon xxxxxxxxxx

hey newbie

nannasandie — 10:44 am, Fri 23 Jul, 2010

Author: nannasandie

Posted: 10:44 am, Fri 23 Jul, 2010

hi mick and welcome
sandie

Members heights

cmonnie — 10:54 am, Tue 20 Jul, 2010

Author: cmonnie

Posted: 10:54 am, Tue 20 Jul, 2010

lol, lol

is this hypermobility?

cghanima — 8:45 pm, Mon 19 Jul, 2010

Author: cghanima

Posted: 8:45 pm, Mon 19 Jul, 2010

looks HM to me have you checked the beighton score http://www.hypermobility.org/beighton.php
that is the criteria for hypermobility syndrome altho all bendys dont score in all areas eg i dont have knee joints that are classed as HM even tho they are more flexable than non bendies and my neck is very bendy but doent count......but i am classed as having HMS, and remember marf and EDS are also very flexable
if i can help give me a shout

xx

Adult joke

Darren — 8:58 am, Mon 19 Jul, 2010

Author: Darren

Posted: 8:58 am, Mon 19 Jul, 2010

Weirdest thing seen at Hospital

Cuddles — 6:47 pm, Sun 18 Jul, 2010

Author: Cuddles

Posted: 6:47 pm, Sun 18 Jul, 2010

Darren and Carol
I dont have my calipers fixed now , i just get a new one every 3 months hee hee
But i am worth it

Help explaining the ECG etc to a 7 year old

Cuddles — 6:45 pm, Sun 18 Jul, 2010

Author: Cuddles

Posted: 6:45 pm, Sun 18 Jul, 2010

Cmonnie
The important thing to remember is you are not alone now when it comes to this condition and explaining stuff .
The gang here have a wealth of knowledge , and they offer some of the best support out there , well i like to think so .

xxxxx

message to newbees

cmonnie — 6:39 pm, Sun 18 Jul, 2010

Author: cmonnie

Posted: 6:39 pm, Sun 18 Jul, 2010

thanks guys and dolls ,xxx

My get up and go - has got up and went

cghanima — 5:25 pm, Sun 18 Jul, 2010

Author: cghanima

Posted: 5:25 pm, Sun 18 Jul, 2010

deff all 3
and another crricket fan i knew there were a few out there

xx

A couple more piccys

Bluenose — 5:11 pm, Sun 18 Jul, 2010

Author: Bluenose

Posted: 5:11 pm, Sun 18 Jul, 2010

Nice pics Darren

I have got quite a lot of blackcurrants from a bush in my garden this year....wasnt sure what to do with them....anyway, I got a ready made pastry from Tesco and lo and behold I made a blackcurrant tart...lol
Heck it was good too....I should have been a cook...lol

On ya Bike ( fr the ladies )

Pixi — 3:16 pm, Sun 18 Jul, 2010

Author: Pixi

Posted: 3:16 pm, Sun 18 Jul, 2010

click for link

There's various saddles on the linked site. I have an exercise bike, but am unable to use it because the seat is uncomfy and the handle bars are in the wrong position. There needs to be a handle bar that pulls back like ape hangars

Daily Chatterbox - Post your News here

Darren — 9:42 am, Sun 18 Jul, 2010

Author: Darren

Posted: 9:42 am, Sun 18 Jul, 2010

Polly wrote:

My vegetables are coming along but was disappointed with my first batch of potatoes. They weren't as tasty as I would have hoped for new ones. The make was "Pixie" so maybe there is something in the name that means tasteless!

northwest UK hosepipe ban

Polly — 11:30 am, Sat 17 Jul, 2010

Author: Polly

Posted: 11:30 am, Sat 17 Jul, 2010

My friend has told me she heard that anyone with a blue badge are allowed to use a hose pipe.

happy happy happy

Polly — 11:14 am, Sat 17 Jul, 2010

Author: Polly

Posted: 11:14 am, Sat 17 Jul, 2010

That is brilliant news, congratulations to you both. x