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HHT (otherwise known as Hereditary hemorrhagic telangiectasia or Osler-Weber-Rendu syndrome)
Information
What is it?
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)
What are the main symptoms?
Sadly 9 out of 10 people who have HHT have not been diagnosed, and as someone who knows all the symptoms too well, I can’t help but pick up on them with friends and so forth.
Here are the Symptoms:
1. NOSEBLEEDS, spontaneous and recurrent.
2. TELANGIECTASES, multiple, at characteristic sites including lips, oral cavity, fingers and nose.
3. INTERNAL LESIONS such as: Gastrointestinal telangiectasia (with or without bleeding), Pulmonary AVM, Hepatic AVM, Cerebral AVM, Spinal AVM, Multiple AVMs, etc.
4. FAMILY HISTORY- a first degree relative with HHT according to these criteria.
The HHT Diagnosis is:
- Definite if 3 criteria are present
- Possible or suspected if 2 criteria are present
- Unlikely if fewer than 2 criteria are present.
here is the HHT website with all the information on symptoms. So if you have these, or know someone else who has them, please see a doctor/ inform them to see a doctor who is aware of the condition and can give you a diagnosis. If you click in the links at the top of the website it is easy to find more information about HHT.
Location: World wide.
Members: 16
Latest Activity: May 12
Discussion Forum
What are your best strategies for handling the nosebleeds?
Started by BTH. Last reply by Fish May 10. 6 Replies 0 Likes
My wife's family is historically from the region comprising eastern Germany / Poland, where HHT is prevalent (we're in Southern Maryland right now), and her Mom had it, and her brother and nephew…Continue
Brain AVM Study for HHT patients
Started by dancermom May 8. 0 Replies 0 Likes
BRAIN AVM STUDYWilliam Young, MD University of California, San FranciscoMarie Faughnan, MD University of TorontoHHT Centers of Excellence across North America are now actively recruiting HHT patients…Continue
Is anyone taking tamoxifen to reduce bleeding in HHT?
Started by dancermom Feb 11. 0 Replies 0 Likes
I came across this study today, and I was wondering if anyone here has tried tamoxifen: http://www.ncbi.nlm.nih.gov/pubmed/19160429Continue
Comment Wall
Comment
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Moderator Comment by dancermom on May 12, 2013 at 4:56pm -
My son is doing an informational poster about HHT for high school this week. :)
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Moderator Comment by dancermom on May 9, 2013 at 7:20pm -
Welcome, new members! Feel free to leave a comment or open a discussion either to ask questions or to share what you have learned about HHT.
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Moderator Comment by dancermom on May 7, 2013 at 4:28pm -
For those of you who like Facebook, I see there is an HHT International group you can join. There is some information about doctor recommendations and current studies on the group. Take a look and see if you find anything helpful.
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Moderator Comment by Swami Jim on February 19, 2013 at 6:36pm -
Wow, learn something new all the time here. When all of the sudden, Yep...perhaps all of those nose bleeds MaY have been just waiting for my avm burst....
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Comment by Jen Rivard on October 26, 2012 at 8:57am -
Thanks for your suggestions!
I did't know about hhtdoctor.org.
no one is close, but boston may not be bad.
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Comment by Jen Rivard on October 26, 2012 at 8:57am
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Thanks for your suggestions!
I did't know about hhtdoctor.org.
no one is close, but boston may not be bad.
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Moderator Comment by dancermom on October 26, 2012 at 8:50am -
Hi, Jen, you may want to ask this question in general discussion as well, as most of our HHT members haven't joined this group yet. Have you tried hhtdoctor.org or http://hht.org/about-hht/ask-the-experts/
That is probably where I would start if I were looking for a doctor. I hope you get some personal recommendations from our members, too.
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Comment by Jen Rivard on October 26, 2012 at 8:44am
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Hi Everyone,
Have you tried to get a doctor that knows about hht? I am afraid to talk, and to type. I am really sick of explaining the whole thing and getting the look like I am crazy. Would any of you, maybe have a solution for me? I am lucky to have found a doctor for my kids. They use Boston Children's Hospital, while still being close. Any help would great. Thanks Jen
Opps!
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Comment by Jen Rivard on October 26, 2012 at 7:53am
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Hi Everyone,
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Comment by Alinta on October 2, 2012 at 12:51pm -
Glad to help Christine. :) feel free to share any information you would like to add
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Blog Posts
confusion as symptoms mount... time for new dr?
Posted by mamaginof3 on May 9, 2013 at 3:13pm 14 Comments 0 Likes
HHT Diagnosis or Suspected
Posted by Fish on May 10, 2013 at 3:25pm 1 Comment 0 Likes
My husband has HHT . Daughter has been tested but no results yet. Praying God spares my children. I have two granddaughters. I have another daughter who has not been tested. We found the HHT Center in Chapel Hill after years of nosebleeds. He has…
Continue
Dreams... changing
Posted by Michael on May 2, 2013 at 3:14am 5 Comments 1 Like
Hello there,
how it's for you? In my case, I have the paralysis since last october 2012. Before that I was very active with cross country running, dogsport, and so on. The good thing: In my dreams I had no Paralysis. I run in my dreams,…
Continue
One year since my bleed, more or less
Posted by tdz103m on May 2, 2013 at 5:34am 3 Comments 4 Likes
I don't know exactly when it happened because I slept through May 1, 2012. All day.
May 2, I was able to move around a bit. May 3 a bit more but by May 4th I was feeling in the deepness of it and told my wife to dial 911 and it was into the…
Ben's Friends Co-Founder Scott Orn Featured on Thoughtbot Podcast
Posted by Armando A. on April 21, 2013 at 8:00am 0 Comments 2 Likes
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