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worried about having hcm with OSLER-WEBER-RENDU SYNDROME

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  • mtlieb
    replied
    Re: worried about having hcm with OSLER-WEBER-RENDU SYNDROME

    Jen,

    Great news! You must be so relieved

    Jim

    Leave a comment:


  • Pam Alexson
    replied
    Re: worried about having hcm with OSLER-WEBER-RENDU SYNDROME

    Jen, Equally I share everyones good wishes and happiness for you. Pam

    Leave a comment:


  • LynnS
    replied
    Re: worried about having hcm with OSLER-WEBER-RENDU SYNDROME

    Jen - this is great news!! One less thing to contend with! Now it's on to Cleveland Clinic, have a safe trip and a good visit with Dr. Lever.

    Lynn

    Leave a comment:


  • Lisa Salberg
    replied
    Re: worried about having hcm with OSLER-WEBER-RENDU SYNDROME

    GREAT NEWS!!!!!!!!!!

    I am very happy for you!

    Lisa

    Leave a comment:


  • Laoshur
    replied
    Re: worried about having hcm with OSLER-WEBER-RENDU SYNDROME

    Wonderful news!
    Rhoda

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  • Reenie
    replied
    Re: worried about having hcm with OSLER-WEBER-RENDU SYNDROME

    I'm really happy for you!

    Reenie

    Leave a comment:


  • jujemendoza2002
    replied
    Re: worried about having hcm with OSLER-WEBER-RENDU SYNDROME

    I went and had my c-scan for hht and I think everything is ok, I don't have any signs of the disease. Isn't that great!

    Leave a comment:


  • shirleymahoney
    replied
    Re: worried about having hcm with OSLER-WEBER-RENDU SYNDROME

    Jen

    I wish you the very best, I hope your test turn out good you have enough on your dish to contend with

    Shirley

    Leave a comment:


  • jujemendoza2002
    replied
    Re: worried about having hcm with OSLER-WEBER-RENDU SYNDROME

    I went for my cat scan last friday, but I don't know the test results yet, I hope I don't have hht, thats scary!
    Thanks to everyone who's thought of me during this time.

    Leave a comment:


  • Reenie
    replied
    Re: worried about having hcm with OSLER-WEBER-RENDU SYNDROME

    Good luck, Jen. We'll be thinking of you.

    Reenie

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  • jujemendoza2002
    replied
    Re: worried about having hcm with OSLER-WEBER-RENDU SYNDROME

    Thanks all,
    Sometimes with the bleeding you don't know, sometime the lesions are in the brain and/ or lungs and you don't know it till the lesion breaks and from what I understand you can die suddenly. My cousin has it in the brain and takes siezure meds to help controll it.
    Lisa I do have the rapid atrail fib. matter of fact I might need surgury to try stop it and I am on coumadin. Matter of fact Iv'e been feeling not so hot lately. The ct scans I have on friday should tell if I have hht in my lungs or brain. I feel like my whole body is falling apart

    Jen

    Leave a comment:


  • Sarah
    replied
    Re: worried about having hcm with OSLER-WEBER-RENDU SYNDROME

    Lisa,

    I think what she said was that she IS on coumadin for her afib.

    Jen,

    I'm very sorry about your son.

    I'm curious, though, about the bleeding thing --it sounds like it would be pretty obvious if you have it or not, especially since you son had symptoms at such a young age.

    What are you taking for the afib? have you done all you can to get back to sinus? I would go to Cleveland anyway --you don't have to wait for the worst case scenario to get the treatment you need.

    hang in there!!!

    Sarah

    Leave a comment:


  • Linda
    replied
    Re: worried about having hcm with OSLER-WEBER-RENDU SYNDROME

    Jen, We'll be thinking about you, please keep us posted, Best wishes. Linda

    Leave a comment:


  • Lisa Salberg
    replied
    Re: worried about having hcm with OSLER-WEBER-RENDU SYNDROME

    Jen,
    It sounds like you have many things to think about. Lets hope A/F is not something you have to contend with!
    Thank you for the eduacation on this condition.
    Best wishes,
    Lisa

    Leave a comment:


  • worried about having hcm with OSLER-WEBER-RENDU SYNDROME

    I swear that I am a genetic disaster. I already have the hcm and on the other side of my family there is another rare genetic disease that every one but me has and I'm going to be tested this week to see if I got it or not. The disease is called Osler-Weber-Rendu-Syndrome, it is where tiny, matted balls bleed on slight provocation. They can be found under the fingernails or on the lining of the mouth, nose or digestive track. They are also found in the lungs, where they can interfere with normal breathing and produce sputum that is saturated with blood.
    Nosebleeds and digestive tract bleeds are the most common consquences of this syndrome. It is inherited disease, and a mother or a father can pass the problem on to children. In fact another name for the syndrome is hereditary hemmorrahagic telangiectasia.
    This worries me ... my Mom bleeds from the nose and throat ,gums and airways. My aunt bleeds internally and my uncle and grandpa died from complications with hht. Both my cousins have a mild form of the disease and my son had the spots in his mouth from hht before he passed away from the hcm at 6 years old. My mom can not even take a baby asprin, let alone a blood thinner like I need to treat my atrail fib. that I have with the hcm. I worried about having 2 rare diseases and the hht, most doctors don't even know what it is, for good care I would have to travel to cleveland clinic for sure.
    I think the site for hht is www. HHT.org
    Looking for support and advise.
    Jen
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