Just Introducing Myself!

[Jess]

Hello everyone! I thought I'd introduce myself. My name is Jessica (Jess if you're a friend) and I come from a very involved history of HHT sufferers. The first diagnosis occured about twenty years ago when it killed my grandfather, a few years later followed by half of my father's family (of course). It took my father in late January of this year, and I've a date with a geneticst on May 2nd, who can hopefully determine if all these red spots on my skin are just some interesting phenomenon or my first symptom (I'm twenty years old). Other than that, I like video games and novels (Wheel of Time currently). If you feel like talking, let me know!

Coincidentally, I accidentally created a user yesterday... and used an e-mail address that no longer exists. Does anyone know how to delete them? Thanks!

~Jess

[Matt]

Just tell me the name of the user, and I can do that easily 

Good to see more people of all ages joining - I'm 20 myself too 

Welcome 

[Jess]

The name is "lionthief". Thanks so much! It's just that I didn't realize there were few enough users that I could use my first name at the time- which is way cool.

You're also 20? Super neat.  Glad to see I'm not the only one, y'know? And since there's no one really to discuss it with... Especially considering that no one our age tends to know about it (due chiefly to the fact that it's not as much of a concern)... And no one seems to believe that nosebleeds and red dots on the skin can indicate anything serious! That drives me nuts!

I'm rambling, and I make it sound like I go around discussing it (which I do not); except at Blood Drives when I try to get people to donate. It would just be nice if knowledge was more widespread...

[Matt]

The name is "lionthief". Thanks so much! It's just that I didn't realize there were few enough users that I could use my first name at the time- which is way cool.

You're also 20? Super neat.  Glad to see I'm not the only one, y'know? And since there's no one really to discuss it with... Especially considering that no one our age tends to know about it (due chiefly to the fact that it's not as much of a concern)... And no one seems to believe that nosebleeds and red dots on the skin can indicate anything serious! That drives me nuts!

I'm rambling, and I make it sound like I go around discussing it (which I do not); except at Blood Drives when I try to get people to donate. It would just be nice if knowledge was more widespread...

Thanks - user now deleted

I know what you mean, I'd had nosebleeds for years, but it was never actually looked into (even though we kept asking them too), then when I had a bleed from something else that wouldn't stop (possibly it's something due to the HHT, but I don't know), they kept me in because they said my oxygen was low, they then did a few more tests and a couple of months later they told me I had HHT - and that was January last year that they told me.

The annoying thing is though, I now suspect it is due to the HHT that my eyesight has been so poor all these years, and why it keeps deteriorating and they couldn't figure out why.

I suspect that the reason that not many our age know about it, is because not many people in general know about it anyway (there are quite a few Doctors who are not even aware about it still), but after a quick search of the internet, it did indicate to me that there was no place for people with HHT (and their friends, families and anyone curious about the condition) to simply join and be able to talk together online - therefore I decided to set a place up.

 

[Jess]

You're a generous guy to give us something like that! Personally I hope to enlist a few relations; if only they were internet type people! 

[Matt]

Well, I like any excuse to set up a new website

[AliCat]

Hi Everyone

Just came by this board by chance yesterday.

I was diagnosed with HHT last year but i as i don't really know my family of which i inherted it from i've kinda been on my own with the problem. So its good to share with other people as in general i feel abit embarrassed by my nosebleeds especially when they happen in public.  At the moment i've been using Estriol cream which has helped abit and im on a waiting list to have lazer treatment, so i hope it might work. Im luckey in the sense that as far as i know its jus my nose thats the problem, apparently its not so bad down the generations, but im 19 so time will tell.

Neways tis good to have ppl to talk to, thanx 4 listenin.  

*Ali*

[Jess]

Welcome Ali! Good to have you! ^^

[bob]

Hello Ali,I think we will all sympathise with the feeling of embarassment you speak of when out in public with a nose bleed.
I must confess That it is something I have never been able to come to terms with 100%,and I have bled now for more years than I care to remember.
But you have youth on your side and will for sure get by with a will,as you have your whole life to look foward too.
You must try the laser treatment but do not overdo it,same with standard cauterisation,if it does no lasting good give it a wide birth,I run a mile now whenever it is mentioned.
The best treatment is finding a way that suits your nose to be more comfortable and thus less epitaxis,keeping the nasals moist,I use distilled water,neptosin,and e45 cream.(not at the same time he.he.)
A lady in the states on another web site for hht swears by preperation H cream and has used it for years.
So I suppose whatever suit you best is what to use.
Anyway Ali pleased you have joined up,it is nice to know your not alone.

Take care be happy........BOB..

[Matt]

Hi Ali, I know exactly what you mean - I was diagnosed last January, but I also have no idea which member of my family it is inherited from.

[kathy]

Matt, you must have inherited it from either your mother or father...it cannot skip a generation.

[Matt]

Matt, you must have inherited it from either your mother or father...it cannot skip a generation.

Really?

Hmmmm..... I wonder which one it could be then 

[kathy]

My eldest sister does not have any nosebleeds but 2 of her 3 children have nosebleeds.  Having nosebleeds is the usual and most common symptom.  It may mean that one of your parents have internal AVM's but not nosebleeds (?)  A genetecist can answer your questions regarding hereditary conditions.  These specialists are normally based in all major teaching hospitals....Goood luck!  Did you get the email I sent you about Kaltostat?

[Matt]

Yes, thank you - I did.

I know that they were on about testing the rest of my family to see if any of them had it too, but I think everyone's too busy so they haven't bothered trying to sort it out (my family I mean).

[Brenda623]

Hello everyone my name is Brenda and I live in West Virginia. I found out that I have a brain AVM and an aneurysm 4 months ago. My mother died from a brain AVM in 2004. I was told all these year's with my mom that AVMs are not hereditary. After finding out that I also have an AVM I set out on the internet to look for a link to heredity and AVM's. In my search I came across HHT and started doing as much research as I could to find out what HHT is. I had nose bleeds when i was a child, my mother would have to take me to the ER to have them packed. I don't really have nose bleeds much now and I am 38 years old. My sister gets nose bleeds a lot but not to the point that they need packing. I have spoken with Dr, White on the phone, (he is the founder of the clinic in Yale University) and he asked me to send him all of my medical records so I did. He called me just a few days later and told me that he thinks I do have HHT and wants me to have an endoscopy and colonoscopy done to see if they can find any AVMs in my stomach or intestines. I have become anemic from rectal bleeding and my family doctor has never been able to find out where the bleeding is coming from. I still don't know much about or understand HHT and I would be thankful to anyone that can explain it more to me. My family doctor and even the endoscopic doctor have never heard of HHT so they don't know how to treat me.