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Cryopathic

Support.

38 posts in this topic

Hi,

I'm out of it today - and my language skills are *BEEP*, sorry if I don't make total sense or just sound odd(er than usual)

I'd be coming from Scotland. I'm not always safe on public transport. And I also do quite a lot of getting on the wrong train and reading timetables wrong, missing stops, stranding myself. Money could be a factor for some of us. And travelling far is knackering - limits brainpower for communicating.

If there's not loads of people wanting other meetings closer to where they are, then I'm very happy setting off and aiming in the direction of the midlands and see what happens - I'm in need of an adventure.

don't you feel sorry for these people who have to row across the atlantic or something to find their limits?

Hope UKAN get back to you soon Damian. They always took a while but answered me in the end. I'm wondering if they have a big volume of correspondence. And if everyone there has N, I can see why it could take a while. If we got a date sorted, do you think UKAN would e/mail members - for people who don't check the boards.

Ta for making things happen

Petra

IT was started by Bagpuss all the cred big hug

I cant make this happen nor can anyone else.unless we all come together. then things can happen.

I appreciate the travel distance and problems I could try to get the train times and platform numbers if that would help with confusion. Cause I be the same have to ask fifty different people before i sit down is going........

As for UKAN when they get intouch, I will ask if they would do that and if not see if there would be anyway I could try to get message to them.let you know

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GOOD LUCK WITH UKAN GUYS.WHEN THE T.V CREW THAT WENT OUT TO THE STATES TRIED IT TOOK THEM AGES TO EVEN GET BACK TO THEM,BUT I MUST THINK POSITIVE.BUT THIS IS SOMETHING THAT I REALLY WANT TO DO AND SEE THROUGH FOR ALL OF US.IM GOING TO GO THROUGH THE MEMBERS LIST ON HERE IN A MIN AND SEND A MESSAGE TO ANY FELLOW BRITS :rolleyes:

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re - making things happen - that's me making confusion, trying to talk when my brain gears keep slipping I was meaning - thanks to yous for starting this off.

And cheers for offering to help with times and platforms - When I've time I can get that bit done. I've just got to have a lucky day when I set off, or just be happy with having a w/e in Llandudno.

I think there'll be loads of people wanting to come.

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re - making things happen - that's me making confusion, trying to talk when my brain gears keep slipping I was meaning - thanks to yous for starting this off.

And cheers for offering to help with times and platforms - When I've time I can get that bit done. I've just got to have a lucky day when I set off, or just be happy with having a w/e in Llandudno.

I think there'll be loads of people wanting to come.

well if you know of anyone who else on sites from uk with our conditions the more the better.

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Hi U.K. members,

Several posts have indicated that online support is not available for Narcoleptics in the U.K. I discovered this website awhile back when I was looking for more information on this disorder. The information was very helpful and have used it several times to educate others. They do provide contact information that might be helpful in finding the support you are looking for in the U.K. :rolleyes:

http://www.narcolepsy.org.uk/narcolepsy/employment.html

UKAN..........YES WE KNOW ABOUT UKAN AND EACH TO THERE OWN. I READ THIS POST AWEEK OR TO AGO AND THOUGHT IT BEST NOT TO COMMENT.BUT SORRY ,THEY TAKE YOUR MONEY ,NEVER GET BACK TO YOU......BUT ENOUGHS ENOUGH A CLOSE FRIEND OF MINE WHO IS BETTER THAN ME ,AS HE KEEPS GIVING THEM ANOTHER CHANCE.HE HAS OFFERED TO HELP IF THEY NEED HELP WITH THE SITE ,STILL NOTHING.WE HAVE MADE PHONE CALLS ETC.IF YOU POST SOMETHING ON HERE THERE IS ALWAYS AN ANSWER.SO SORRY WE ARE NOT THICK BUT I WILL STICK TO A SITE THAT GIVES YOU HOPE AND SURPPORT 24/7

MY FRIEND NEEDED UKAN LAST WEEKEND MORE THAN YOU WILL EVER KNOW.. LUCKY FOR HIM HE FOUND ME .WHERE YOU MIGHT ASK, ON A GREAT SITE CALLED NARCOLEPSY NETWORK COMMUNITY :)

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So if you guys do get a site for support in the UK going, does that mean you will leave us? :(

I like having people from other countries here. not only cuz I like you guys...

But because it seems to me that if diffrent countries are working on finding drugs or cures, Then having people from there bring it up is a good way to learn about that information. I once saw a TV show talking about Hypocretin transplants or transfusions or something. I think that was going on in the UK.

Does anyone know what I'm talking about? I dont remember it to well... I probably fell asleep. lol.

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So if you guys do get a site for support in the UK going, does that mean you will leave us? :(

I like having people from other countries here. not only cuz I like you guys...

But because it seems to me that if diffrent countries are working on finding drugs or cures, Then having people from there bring it up is a good way to learn about that information. I once saw a TV show talking about Hypocretin transplants or transfusions or something. I think that was going on in the UK.

Does anyone know what I'm talking about? I dont remember it to well... I probably fell asleep. lol.

As for as I know Stu was gunna make a forum/sub forum of this site for us in the uk.I pay for a domain. So if possible then we will stay posting on here.There is a sight for us it is called UKAN but even after paying subscription fee, The site is dead now no support everyone is moving to this site or another.

I know there is studys going on regarding hypocretin but if the speed of the doctors in the uk is anything to go by then we in for a long long long time

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So if you guys do get a site for support in the UK going, does that mean you will leave us? :(

I like having people from other countries here. not only cuz I like you guys...

But because it seems to me that if diffrent countries are working on finding drugs or cures, Then having people from there bring it up is a good way to learn about that information. I once saw a TV show talking about Hypocretin transplants or transfusions or something. I think that was going on in the UK.

Does anyone know what I'm talking about? I dont remember it to well... I probably fell asleep. lol.

We will stay for now Stu is ment to be putting a sub forum on this site for us from the uk. Will still be altogether.

I know hypocretin is being researched but not here I found someone who is doing it in canada.

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Hi! I have found you all , great idea to set this up Damian.

Regarding the hypocretin transfusions, there is a really good doctor in Scotland who has done some work with children with n. His name is DR Sameer Zuberi. (Glasgow childrens hospital)

If you google his name you will find out some info. on what he has done so far. (I think that the Cutting Edge program took his 'sleep nurse' over to NN with a young lad who has n?). So he sounds a very proactive doctor.

We have a 5 year old daughter with possible n. We are currently living in Cornwall, and struggling with her issues, particularly education. We have not ruled out relocation to be nearer someone like him in the future. A lovely mum from NN is helping us at the moment with issues.

Well done to NN to help the U.K , I am very greatful to you for everything.

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Hi! I have found you all , great idea to set this up Damian.

Regarding the hypocretin transfusions, there is a really good doctor in Scotland who has done some work with children with n. His name is DR Sameer Zuberi. (Glasgow childrens hospital)

If you google his name you will find out some info. on what he has done so far. (I think that the Cutting Edge program took his 'sleep nurse' over to NN with a young lad who has n?). So he sounds a very proactive doctor.

We have a 5 year old daughter with possible n. We are currently living in Cornwall, and struggling with her issues, particularly education. We have not ruled out relocation to be nearer someone like him in the future. A lovely mum from NN is helping us at the moment with issues.

Well done to NN to help the U.K , I am very greatful to you for everything.

I cannot take the credit Bagpuss gave me the push and is the person that supported me 100% when I was really low due to my condition in posts through out this site.. so I cannot stress how much of a jump start I got. Bagpuss is of at moment be back on in a couple of days so if any problems or im not available then you can contact Bagpuss instead of me.

But the biggest praise of all should go to the ADMINISTRATION TEAM ON NNC for allowing us

to post on there site. Thanks very much GREATBIG47.

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So if you guys do get a site for support in the UK going, does that mean you will leave us? :(

I like having people from other countries here. not only cuz I like you guys...

But because it seems to me that if diffrent countries are working on finding drugs or cures, Then having people from there bring it up is a good way to learn about that information. I once saw a TV show talking about Hypocretin transplants or transfusions or something. I think that was going on in the UK.

Does anyone know what I'm talking about? I dont remember it to well... I probably fell asleep. lol.

NO WAY :o ,IF US BRITS EVER DO GET ANYTHING OFF THE GROUND WE WOULD NEVER LEAVE THIS SITE.SORRY GUYS I AM HERE TO STAY.ITS THE BEST....... ON MY NEW LEAFLETS ITS THIS SITE I HAVE NOW PUT ON THEM. :)

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NO WAY :o ,IF US BRITS EVER DO GET ANYTHING OFF THE GROUND WE WOULD NEVER LEAVE THIS SITE.SORRY GUYS I AM HERE TO STAY.ITS THE BEST....... ON MY NEW LEAFLETS ITS THIS SITE I HAVE NOW PUT ON THEM. :)

I totally agree we are here to stay thanks STU. UKAN are really uptight and are threatening to kick us off as some of my posts are negative and I told someone else to do there research before adding there comment that was made directly at me. We that are already here are here to stay and will not be going anywhere.

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So if you guys do get a site for support in the UK going, does that mean you will leave us? :(

I like having people from other countries here. not only cuz I like you guys...

But because it seems to me that if diffrent countries are working on finding drugs or cures, Then having people from there bring it up is a good way to learn about that information. I once saw a TV show talking about Hypocretin transplants or transfusions or something. I think that was going on in the UK.

Does anyone know what I'm talking about? I dont remember it to well... I probably fell asleep. lol.

None of us would ever leave the NNC its our second home, even when our uk site was running it would get direct link straight to here.

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