More than a nosebleed...for 1 in 5000 people world wide

[MrsBrady]

My goal in posting this info is so that others may be more aware...and if you
or someone you know is having recurrent nosebleeds (that's only one symptom)
that you need to be tested or screened. See website for more.
I'm not trying to scare but inform...if you've never seen anyone bleed out with this..and one can
bleed to death from this (external or internal bleeding)...it's frightening.
There is no cure (we need one)...but thanks to modern medicine can be treated or managed.

Thank you

http://www.hht.org/

Hereditary Hemorrhagic Telangiectasia (HHT) is a genetic disorder of the blood vessels, which affects approximately 1 in 5,000 people. It affects males and females from all racial and ethnic groups. The disorder is also sometimes referred to as Osler-Weber-Rendu (OWR) after several doctors who studied HHT about 100 years ago.

http://www.hht.org/about-hht

A person with HHT has a tendency to form blood vessels that lack normal capillaries between an artery and vein. This means that arterial blood under high pressure flows directly into a vein without first having to squeeze through very small capillaries. This place where an artery is connected directly to a vein tends to be a fragile site that can rupture and bleed. We usually call a blood vessel that is abnormal in this way a telangiectasia (tel-AN-jee-eck-TAZE-ee-ya) if it involves small blood vessels. The telangiectasias most commonly occur on the skin of the face and hands and the lining of the nose and mouth. The telangiectasias on the lining of the nose cause recurrent nosebleeds, the most common symptom of HHT. Telangiectasias can also occur in the digestive tract, particularly in the stomach and small bowel. There are a number of different treatments available for bleeding from telangiectasias in the nose and digestive tract

An abnormality that involves a larger blood vessel is called an arteriovenous malformation (AVM). Some people with HHT will also have AVMs in one or more organs. AVMs occurring in the lungs and brain and can lead to serious complications. Everyone with HHT should undergo screening for lung and brain AVMs because if these are detected, they can be treated. The HHT Foundation recommends that all patients and families with HHT be assessed at an HHT Treatment Center for proper screening and treatment./

[Blue Diadem]

1. I remember worrying when my kids would get nosebleeds.

Runs in husband's family. It wasn't until late 80's when his family participated in testing from a Michigan University that we learned my husband didn't inherit it. A couple siblings did and now a couple of their adult children have it. It is an awful disease, I remember my Mil getting transfusions repeatedly and once a life saving surgery.