Run for the hills!!
Ok seriously, here is an article in the Canadian Times Colonist about my condition, HHT. The article is oddly titled, The Nosebleed Disease. Umm, kinda catchy I guess. Definitely better than Osler-Weber-Rendu:
Rating 2T [HHT] is characterized by the presence of arteriovenous (artery-vein) malformations (AVMs) that involve direct connections between arteries and veins without the usual intervening capillaries. These AVMs can vary in size from a pinhead to a pea. The tiniest AVMs are called telangiectases. Telangiectases that are close to the surface of the skin and mucous membranes in areas like the nose are very fragile and tend to rupture easily and bleed.
For the most part, people with HHT have a normal lifespan, Vethanayagam says. But large AVMs can bleed in the gastrointestinal (GI) tract, brain, spine, lung, liver and other sites and create major, sometimes life-threatening, incidents such as a stroke or brain abscess.
Jerome, who needs a blood transfusion every six months, counts himself lucky that he doesn’t need a transfusion every five weeks, like his dad, who also had internal bleeding.
He dismisses his disease “as an inconvenience” because he says he doesn’t want to come across as a whiner and because he is a private person. He’s only talking about HHT because he thinks it may help people who haven’t yet been diagnosed to notice similarities with their own situation.”
I have an HHT Google Alert set up and it’s surprising how rare it actually makes the news. But know you know about it. And knowing’s half the battle.