Getting a bit repetitive...

[Matt]

Okay, this is getting rather annoying (not to mention a little scary) - I'm lucky to go a day without nosebleeds, true. But today is ridiculous - I swear I've had about 10 so far - with times generally being around the 20-30 minute mark before stopping....then the other side starts 

[lenny]

Hoped some others would have joined this sight by now seems plenty of people viewing but not many joining in. COME ON EVERY ONE . The more people contribute the more others will join in . I know our condition can get you down but there must be people who havehad treatment that has been a success,and others like me who want to have some hope of a cure or at least some relief even for a short while.I have had several blood transfusions and two lazer operations with very limited sucessIm still getting nose bleeds almost every day ,sometimes several for days on end .As I have said before I would like to hear from people who have had the youngs procedure and how the sealing up of the nose affects your daily life ect; after it has been done.This is a web sight for hht sufferers and there families,lets hear from others please.Both me and my sister have met a couple of other sufferers and found it good to talk with people who know how we feel. hope to hear from others soon
           Lenny

[Matt]

One reason is due to me not getting round to approving them yet (I have been off for a couple of weeks, due to my HHT of course), but 3 users have now been approved!

[lenny]

Hi every one nice to see more people joining in  just thought I would up date you on my condition, going back into hospital in two weeks Im afraid to have lazer treatment again didnt do much good last time giving it a bigger go this time my surgeon says, but not to hopefull still at least hes trying. From what I can understand even if success is limited and tempery better than nothing  at all .BIeeding from my nose every day as usuall, already had several transfusions lowest reading 4.6 ,doctor said I should have been carried in he had seen higher readings from serious road accidents now know myself when low and just contact hospital when I need a top up. I seem to be one of the lucky ones though  only seem to have nose bleeds, no pvms at the moment but more red spots appearing on my face and body as I get older. As i said nice to hear from more people ,would like to know how treatment from others differs from mine or just to talk so to speak to people who know how I feel at times. Hope to hear from some of you soon.   
          Lenny

[wendy]

As someone who has not got HHT but whose family has got a risk of inheriting it, I would be interested to know at what age dod those affected get signs or symptoms of HHT. As far as I am aware, it seems a question  of waiting to see whether my own teenage children may or may not be affected in the future. They have no outward visible signs on their skin at present, but I have been told they have a 50/50 chance of inheriting HHT from their father. Any information woule be gratefully received.

[lenny]

Hi wendy just thought I would try to answer your question as far as I know  hht can show signs from a very early time or any time up to the age of about 40 years sorry to be the  one to give you this news, Ive had hht from a very early age, but my daughter was about 20 before she showed any symtoms, ie  red spots on her face, but she has not had many nose bleeds so maybe the later you develop the symtoms  maybe the less the severity of HHT. Hope Ive not been the barer of bad news.
          Lenny

[wendy]

Thanks Lenny. Well I think all information is useful. Its better to be aware isn't it and its good that the site is here to support everyone. I am a great believer in positive thinking and of not worrying about things until or if we have anything to worry about. Because my three's dad has the condition and their grandad did I am a lot more aware about genetic conditions and feel its important to gain as much knowledge about the condition as I can in order to support them if necessary in years to come.  Thank goodness for the internet because it was only when we first got it that I started looking the condition up, from then I requested an appointment with genetic consultant. We are hoping that another grown up child from a previous marriage is going to have blood taken and tested to look for the faulty gene, no gaurantees of course but if they do, then there is the possibility that my own three can be tested. I think this is important because then if they wish they will have the decision whether to risk passing the disease onto their own children. Their father and myself didnt get that choice as we were not aware during the marriage that he even had the disease. That having being said of course I would not wish to be without mine but as I said I think its important to at least have the information if we can get it.  I recently made a small donation to 'Genes for jeans' for their annual fundraising and I would not have heard of them if it wasn't for information I have gained.

[wendy]

For anyone dealing with AVMs, there was a story in todays Daily Mirror 9th December about a gentleman who has had to fund his own operation for a lfe-saving operation for a brain AVM. It seems ridiculous that people are having to fund their own surgery now for conditions they have been born with. Anyone interested in the story may be able to access it via the papers website.

[Matt]

For anyone interested, the link is DAD FORCED TO PAY FOR OWN BRAIN OP  from 9 Dec 2006 - mirror.co.uk

To be honest, I've had nosebleeds for years - and I can't remember when they first started (I am 20 now), and have always tired quickly, but just assumed that it was because I was unfit - now obviously I know different.

[lenny]

Hi everyone ,
    back out of hospital had the left side lazerd  just made the right side bleed twice as much, nice to see the sight taking off,I just have very bad nose bleeds so not as bad as some of you but still get very brassed off at times I am very intrested in how others cope with hht and how it affects all there family at times it spoils days out, eating out,or socialising ect:My sister calls it our curse. Maybe one day it will be lifted,Sorry to be a bit negative, hope the sight keeps growing.
           LENNY

[Matt]

No worries - after all, nobody wants to have HHT do they?

[philbarto]

I note there are a few people here with severe nose bleeds I did leave info on the site about a procedure I had done called Youngs procedure or a full nasal closure which I had done at the Sheffield Hallamshire Hospital by consultant ENT Dr Yardley since I had the closure I have not had 1 single bleed in two years I no longer have transfusions time off work feeling totally whacked out or even spoil shirts . I advise anyone with severe nose bleeds casing anaemia and resulting transfusions to have the treatment . Please contact me if you have questions or require info.
Phil B

[David]

FWIW my sister didn't exhibit obvious symptoms until early 40s.

I'm 40, and all my paternal family, siblings, a nephew and cousin feature some symptoms of hht, many are undiagnosed. My sisters have had diagnoses although not DNA tests AFAIK.

I have an appointment with the Family History Unit of the local Genetics facility, in early Jan. As I exhibit few symptoms, except mild aneamia, I'm unworried, but I need to know if my children should be screened.

[jmfw]

Hi to all!  I'd love to have a pen-pal that I can share concerns and questions with.  I hate talking about this with family and friends because it seems to be such a downer but it's hard to get off your mind, especially when you just find out for sure that you have HHT.
I feel lucky after reading about other people's nosebleeds that mine have not been as severe, but they have lasted long enough to send me to the ER.  Since my visit to Mayo where they recommended no drinking because of my liver, a sinus rinse (boy is that fun!) every morning and an oil that I place in both sides of my nose (even more fun) I am still amazed at how many less nosebleeds I have.  I would recommend this as at least something to try before more surgery---that's my goal anyway!

[lenny]

Hi everyone , just a quick message wishing everyone a bleed free christmas and a happy new year, Im sure most of you know how drinking does make the nose bleed more so I will toast you all with a orange juice, but I will have a couple of the real stuff over the christmas period, good luck to everyone.
          Lenny