Does anyone else have HHT?!
Question: When I was 7 My dad was diagnosed with HHT (Hereditary Hemorrhagic Telangiectasia) he had red spots on his lips and nose and had many avms in his lungs nose and brain, when I was 9 he had his lungs coiled and unfourtunatly didn't make it through the operation as he bled out, I now have red dots on my toungue, lips and some in my nose. I have many nose bleeds quite frequantly I am now 12 and had my nose cautorised and it had no effect let alone I have more nose bleeds now!
I have to go up to the royal hildrens every 3 months and have to get regular cat scans, mri's and breathing tests , x rays and every other test you can think of. So if anyone else this ondition please help me out!!!!
Answers: When I was 7 My dad was diagnosed with HHT (Hereditary Hemorrhagic Telangiectasia) he had red spots on his lips and nose and had many avms in his lungs nose and brain, when I was 9 he had his lungs coiled and unfourtunatly didn't make it through the operation as he bled out, I now have red dots on my toungue, lips and some in my nose. I have many nose bleeds quite frequantly I am now 12 and had my nose cautorised and it had no effect let alone I have more nose bleeds now!
I have to go up to the royal hildrens every 3 months and have to get regular cat scans, mri's and breathing tests , x rays and every other test you can think of. So if anyone else this ondition please help me out!!!!
i was officially diagnosed with HHT this fall, though my doctors have been monitoring me since i was born. my mom and all of her six sisters have HHT, as do her two brothers.
i've gone through all of the same tests you've named; i also had an echo bubble and and ultra sound. after a ct scan last month, the doctors found that i have two AVMs in my lungs and now i'm scheduled for further exam and surgery at MAYO clinic. the doctors aren't sure if the AVMs are large enough to be coiled yet, so thats why i may not have to have the surgery yet. however, i'm still missing a week of school over the 28 and 29 of january to go to Mayo, and i will more than likely end up getting the surgery then.
when i first told my closest friends that i was sick, they were very supportive and worried for me. however, i only told four or five of my closest friends - i didn't want to make a big deal out of it. now that i'm like 99% sure that i'm getting the surgery in only three weeks, i don't know what to tell them, so i haven't said anything. i guess i'm really just pretending that i won't have to have it at all, even though i know that if i don't have it now, i'll have to have it later anyways.
so thats basically my story. also, i have numerous red marks like you've mentioned...they're called telangiectasias or something like that. i was born with a large one under my eye..the first big hint that something was up. when i was little, i remember learning the difference between my left hand and right hand by one of the dots, too. i still have that one; its on my right hand, and i can see it while i'm typing this.
anyways. i know this whole ordeal is scary. when i first found out about the AVMs in my lungs, i went through denial, and when i would start to think about them being in there, growing inside of me all nasty and grossly or whatever the heckk they are, i would get so upset i'd just sit wherever i was and hold my sides. but that phobia ish thing only lasted for a few weeks, and now it doesn't really bother me anymore.
anyways, i'm a freshman in highschool; 14 years old. so we're pretty much in the same boat- let me know if you wanna talk sometime or something.
if its okay, i'd be really interested to hear anything you have to say about your dad's surgery.
my mom had her lungs coiled, and the surgery went without a hitch, but i admit i have this secret fear of bleeding out, too.
anyways, let me know if you wanna talk or anything.
:]
Please see the web pages for more details on Osler-Weber-Rendu syndrome.
Consult the doctor.