Anyone have experience with HHT or Osler-Weber Rendu?

Posted by rexie @rexie, Jul 10, 2020

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.

Interested in more discussions like this? Go to the Blood Cancers & Disorders group.

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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Today is HHT Global Awareness Day. Go to: curehht.org
I have hht. My Sister has hht.
1 in 5000 have this hereditary disease. It took our Dad and my Grandma from us.

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@rexie

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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Rexie are you getting iron infusions? Sounds like you really need them.You have nosebleeds like my Sister does.
It’s heartbreaking. I’m so sorry.
Take care💛

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@jlange

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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Jlange please get tested at once and educate yourself! Go to curehht.org
Are you aware that if you have AVM in your lung that you need To take antibiotics with any dental procedures?
Please take care💛

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@janet26

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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Janet please make sure that your friend goes to: curehht.org to find all sorts of materials to educate herself and her Doctors!

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@rexie

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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Hello Rexie, I'm thankful for your post and wondering how you are doing, and specifically am wondering if you have had any more complications, and treatment done to the telangiectasia on the surface of your skin. I'm 63 and have had nosebleeds for many years, also anemic at times. I have a larger protrusion of what appears to be similar to a vericose vein on my lip that is called a 'venus pool' and there is a smaller red spot (HHT) next to it. Dermatologist said that even though the 'venus pool' is not direct symptom of HHT, people with the disease seem to have greater tendency to develop things like the venus pool. I'm considering pulse dye laser treatment for my lip as well as a few spots on my face, and wondering if you have any experience with that?

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@rexie

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.

Jump to this post

I have exactly the same condition and my parents did , my sister does and her daughter. And my daughter has to get iron shots and blood transfusions. I go for iron treatments yearly. We all have HHT. My brother who died at 70, actually went to the hospital for days. He had his nose cauterized so many times that it ruined the inside of his nose. My gastrologist performed the basic tests (stomach & colon) had me swallow a camera and actually saw bleeding in my small intestine.

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@drewb

I have exactly the same condition and my parents did , my sister does and her daughter. And my daughter has to get iron shots and blood transfusions. I go for iron treatments yearly. We all have HHT. My brother who died at 70, actually went to the hospital for days. He had his nose cauterized so many times that it ruined the inside of his nose. My gastrologist performed the basic tests (stomach & colon) had me swallow a camera and actually saw bleeding in my small intestine.

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Welcome @drewb and @dpmoot.
@dpmoot, I found this information about pulsed dye laser treatment from the website that @kchugg11 recommended.

– Pulsed Dye Laser Treatment https://curehht.org/resource/pulsed-dye-laser-treatment/

Did you decide to do the pulsed dye laser treatment on your lip?

@drewb, what is being done for the bleeding in your small intestines?

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