hi im new

leeds36 · **Posted:** Sat Sep 12, 2009 10:06 pm

even though i have been a member of cmt uk for many many years i come across this site and thought i woult take a peek. im 36 and was diagnosed at 18 months old as having cmt by great ormond street hosp, though the diagnosis was only ever done by sight as my older brother has cmt and he was the guiney pig !. 5 yrs ago after my dad passed away i decided to seek answers as too what type of cmt i have, my long term neurologist put me in touch with a genetictist in leeds were i live, 2 yrs of testing and appointments i have baffled science ,my brother has type 1 hiwever my bloods can only be tested in u.s.a. to establish what type, but the doc's all say knowing what type isnt gonna change things, ok it isnt but i like to know. i have had my tendons lengthened twice at 2 and 4 yrs of age, splints for 5 yrs on my legs , wrists operated on at age of 3. i had a teachers aide at school was bullied as a walked and ran like a penguin, anyway shite childhood, followed by my condition getting worse about 21 yrs of age, since had 4 ops on feet and arms as i also have osteochondritis were my bone is dying thru loss of blood supply. im more or less steady now with no further worsening of my condition, most people to look at me would not think i was disabled ,oh i love the dirty looks from senior people when i dare to park with blue badge in a parking bay, it amuses me. anyway im now 36, and luckily my only child a 5yr old seems free of cmt, i manage though it is hard mentally ,to work in a call centre,.

SAM · **Posted:** Sat Sep 12, 2009 10:43 pm

Hi Paul,

Welcome to the forum

Thanks for sharing your story.

Keep posting.

Jackie B · **Posted:** Sun Sep 13, 2009 6:15 am

Hi

.

annie · **Posted:** Sun Sep 13, 2009 9:06 am

hello Paul., pleased to meet you

Sally · **Posted:** Mon Sep 14, 2009 7:58 am

Hi Paul

and welcome. Which call centre do you work in? Only asked as I also worked in a call centre so I do know how difficult it is with day to day work.

Anyway everyone on here is very friendly and supportive, so now you are never alone with your problems.

leeds36 · **Posted:** Mon Sep 14, 2009 12:41 pm

sorry i dont inform anyone which call centre/company i work for over the internet, more than my jobs worth

SamBird · **Posted:** Mon Sep 14, 2009 5:21 pm

Hey Paul!

Proud to know you! You surely have found the right place to vent !

Rhyafire · **Posted:** Mon Sep 21, 2009 12:19 pm

Hi Paul

Hope things are going well for you just now. It's hard when you have so many memories of bullying and nasty comments about your way of walking etc.

I too look just fine and yes don't the crumblies (a term I use for mean older people who seem to think the world owes them a favour and they have got 'it' worse than everyone else!) They do glare and even come over and demand to see your blue badge picture... I tell them sweetly, 'I'll sow you mine if you show me yours first!' Sends em running!
Keep on posting we're a lovely happy family here (No crumblies) and everyone is so supportive on all subjects.
Take care
Rhya

leeds36 · **Posted:** Mon Sep 21, 2009 6:47 pm

hugs xx u can show me yours anytime ryhafire. cant show u mine u might gasp with amazement

SAM · **Posted:** Tue Sep 22, 2009 12:23 am

Jackie B · **Posted:** Tue Sep 22, 2009 5:24 am

As a 60 yrs old am I a crumbly?.

SAM · **Posted:** Tue Sep 22, 2009 9:34 am

*coughs* .... yes .... *ahem*

but we love you anyway

Rhyafire · **Posted:** Tue Sep 22, 2009 2:43 pm

Jackie, you could NEVER be a crumbly

Naughty Sam

Only mean older people need apply

They think that to have a Blue Badge you have to be over 70 and have been in the war

so that all us mere mortals should be grateful for their presence

Oh and they use words like wog and darkie because in their day it was ok

So, sorry Jackie, you don't pass muster, for being waaaaay too lovely :wuvu:

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