Anyone have experience with HHT or Osler-Weber Rendu?

Posted by rexie @rexie, Jul 10 1:02pm

I have an inherited condition called Olser-Weber Rendu. It’s a bleeding disorder that both my mom and my grandfather died from complications of this disease. I am 62 and I am found to be anemic often. My mom died at 70.

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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@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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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.

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So sorry for these challenges. They have suspicions that I may have HHT because if my AVMs. Thank goodness I do not have the bloody noses. I do bruise very easily and gave been anemic at various times of my life. Most recently due to bleeding AVMs in my digestive track. Had a lung AVM repaired last month. Hope to get tested this year.

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I personally do not have this condition but interestingly a friend of mine after many years of not feeling well with anemia nose bleeds trouble swallowing and many of the little red dots you speak of was, just diagnosed with this. It took years before she finally got this diagnosis. I will suggest she join mayo clinic discussions in hopes it will help her. Thank you for sharing at such an opportunistic time

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