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@kellyhahn1

Hello @rexie and welcome to Mayo Clinic Connect. You’ve come to the right place to talk with people who have similar experiences with health and to get support from members who understand what you are going through.

I just wanted to let you all know that I changed the title of this discussion so that it reflects the discussion topic a bit more. It will help other members to see the discussion at a glance, and join in here. The new title is – "Anyone have experience with HHT or Osler-Weber Rendu?” Hereditary hemorrhagic telangiectasia (tuh-lan-jee-uk-TAY-zhuh) (HHT), or Osler-Weber-Rendu disease, is an inherited disorder that causes abnormal connections, called arteriovenous malformations (AVMs), to develop between arteries and veins. The most common locations affected are the nose, lungs, brain and liver.

As we wait for other members to respond, I was wondering if you can share a little more about your experiences? Besides being anemic, are you experiencing any other symptoms? Have you been able to be seen by a provider or specialist yet?

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Replies to "Hello @rexie and welcome to Mayo Clinic Connect. You’ve come to the right place to talk..."

Thank you Kelly. Haven’t quite gotten the hang of this yet. Yes. I do have other disturbing symptoms. I have these small red dots internally and also visible on my face, lips, toes and fingers, and tongue. They are called Telangiectasia. Sometimes I spontaneously bleed from the ones on the surface of my skin, but most often i bleed profusely from my nose.
As I’ve aged the bleeding from my nose has advanced to a stage where I bleed so much blood, so fast for up to twenty or more minutes, that I can choke on the huge clots that form when I try to inhibit the flow in any way.there are times that I bleed like a water faucet tap turned fully on. It is scary for me and frightening for others to see. And I have to carry a big packet of tissues wherever I go. Even in my own home because there is no warning.