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81
Discussion / Re: Disability Living Allowance (DLA)
« Last post by Tracey on September 04, 2010, 08:22:21 PM »
Hi rainbowmum,

I've not been online for a while and as I am in hospital at the moment with my laptop, thought I would catch up on HHT.me  ::)

I was just wondering on how you got on with your appeal in the end? Did you win?  I would love to hear the outcome.

Tracey  ;)
82
Discussion / Re: Likelihood that I have HHT?
« Last post by Tracey on September 04, 2010, 06:23:39 PM »
Hi

The best thing that you could do, is ask your doc to refer you for genetics testing.  I did that for my children and it turned out that one out of the three have inherited it from me.  Mine first manefested when I was just 7 years old.  I don't think there is a particular age for it, except the fact that it is progressive, so gets worse as you get older.

Tracey  ;)
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Discussion / Re: young's peocedure
« Last post by Tracey on September 04, 2010, 06:19:47 PM »
Hi Erica

I have not been online for sometime now, and have just been catching up on some old posts since I was last here.  I was just wondering how you are getting on now that it has been a fair amount of time since your op?  I had Youngs Procedure done some years ago now, like you, only to my right nostrel.  I found it quite hard to adapt to start with and had many of the symptons that you have described, but over time, things have improved and I have become more used to it.

Tracey  ;)
84
Discussion / Re: open letter
« Last post by Tracey on September 04, 2010, 05:30:38 PM »
Hi Bob and Matt  ;)
I haven't been on here for quite a while now, but am currently in the ENT Ward at Torbay Hospital.  I have been here since Wednesday.  Like you, HHT becomes an everyday occurance that you tend to deal with.  It becomes part of the routine, I find the most frustraiting times, other than when I bleed at inconvienent times, is when I spend so much time explaining myself over and over again to medical staff who just can't be bothered to do some research on their paitent.

Tracey
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Discussion / Re: Not coping and needing some one to talk to
« Last post by tweetypie on September 02, 2010, 09:10:15 AM »
Hi thanks for the reply Matt.
It seems its the G.P that has to refer, some thing to do with funding and budgets.
I was wondering if there is a plug of some sort just to close the nostrol off, as a trial before going ahead with youngs procedure.??
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Discussion / Re: open letter
« Last post by Matt on August 20, 2010, 08:55:30 PM »
Nice to hear the good side - very true as well that though it isn't ideal, there's definitely worse things that others may be going through.

As for me, I just put up with it as best I can, after all it's just become routine. I don't have any telangiectasias on my face or skin like yourself or some others, but obviously as mentioned before I do get the nosebleeds - which I've just been given some cream to put inside both nostrils twice daily to see if it makes any difference - if I remember correctly, I was told it should soothe the areas that usually trigger it.

I'll report back whether it seems to make any difference after I've used it for a while.
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Discussion / Re: Not coping and needing some one to talk to
« Last post by Matt on August 20, 2010, 08:45:12 PM »
No problem, moved it for you :)

I wish you luck with this, hopefully someone else will reply volunteering their help, I believe there are a few here who have had the Young's procedure done (EDIT: The following topics may help - http://www.hht.me.uk/discussion/youngs_peocedure_116.0.html & http://www.hht.me.uk/discussion/young_procedure_123.0.html).

Unfortunately I would not be the best person myself as I'm not the most talkative of people, and my experience is minimal really, mostly just blocking my nosebleeds with tissue, having the operation to remove telangiectasias every couple of years or so, and just putting up with the low oxygen levels really.

Overall, I still don't really understand much about HHT - partly due to not taking the time to properly read up on it, but partly because any time I have attempted to, it seems to fly over my head - all I know is that there's people who do understand it (read: various Doctors) and they'll help me by doing what they need to for me.

If the GP is reluctant to refer her, have you already tried asking any of the people at the local hospital who may be more familiar with it? Mine was discovered during an unexpected hospital stay (unexpected because they kept me in when they discovered I had low oxygen levels, and it was a completely different reason I'd visited!), and it was one of the Doctors there, rather than my GP, that ended up referring me a few months later to one of the specialists.
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Discussion / Re: Not coping and needing some one to talk to
« Last post by tweetypie on August 19, 2010, 10:09:16 AM »
SORRY posted in wrong place, Im not up to speed with these sorts of things, so I do apoligise but havnt a clue how to move this. :-[
89
Discussion / Not coping and needing some one to talk to
« Last post by tweetypie on August 19, 2010, 10:00:48 AM »
Hi this is a bit of a long shot.
We have a family history of HHT, my mother has been suffering really severe nose bleeds for quite some time now and is trying to get refered to Hammersmith but the GP is reluctant to send her  >:(.
Our local hospital has suggested the youngs procedure but she is scared as she is very much a nose breather.
She is getting more and more depressed and I think if she could speak to some one who is suffering the same problems it may help her.
We live in Wiltshire and do not know any other people with this condition.
Family history:
Grandmother had condition
We think her father may of had hht.
My mother has it
I have been DNA tested and have it, at present I do not have symptoms
My daughter DNA tested and has it and at present does not have symptoms
If any one would be interested in having a chat with my mum please get in touch (she does not have a computer)
Thanks for taking the time to read this  :)
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Discussion / open letter
« Last post by Bob on August 15, 2010, 09:10:36 PM »
Hi all, seeing as there seems to be very little going on in the hht forum world of chat  I thought that I would put in a word or twenty about my state of play.
Have come to the conclusion that it is best by far for me if I can stay away from the medical profession for as long as possible, I have seen many consultants since my first visit  approx,  1984/85, it is now quite some time since my last visit to my consultant whom I am sure knew that even a partial fix for my condition was never  even a possibility.
I will not bore you with detail as I am sure I have already expressed myself in previous mails on this site, but on the good side as I am now into my 66th year, and allthough bleeding for England almost being a daily event, my general health is not bad, on my good days I can feel quite good within myself.
The telangiactasia is still increasing on my face but do not bleed as they did in previous years, unless I am a bit rough with the towel. I have many telan on my face now but my courting days are over so who cares, certainly not me I am just happy to be here enjoying a simple quiet life.
So when we feel down just remember as I do, there are many out there a heck of a lot worse off than some of us.
Be Lucky, take care.
BOB..................
  PS, A few replys would be nice,as too how you deal with your HHT in everyday life...................................
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