If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

Announcement

Collapse
No announcement yet.

worried about having hcm with OSLER-WEBER-RENDU SYNDROME

Collapse

About the Author

Collapse

jujemendoza2002 Find out more about jujemendoza2002
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • 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
    Jen

  • #2
    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
    Knowledge is power ... Stay informed!
    YOU can make a difference - all you have to do is try!

    Dx age 12 current age 46 and counting!
    lost: 5 family members to HCM (SCD, Stroke, CHF)
    Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
    Therapy - ICD (implanted 97, 01, 04 and 11, medication
    Currently not obstructed
    Complications - unnecessary pacemaker and stroke (unrelated to each other)

    Comment


    • #3
      Re: worried about having hcm with OSLER-WEBER-RENDU SYNDROME

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

      Comment


      • #4
        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

        Comment


        • #5
          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
          Jen

          Comment


          • #6
            Re: worried about having hcm with OSLER-WEBER-RENDU SYNDROME

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

            Reenie
            Reenie

            ****************
            Husband has HCM.
            3 kids - ages 23, 21, & 19. All presently clear of HCM.

            Comment


            • #7
              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.
              Jen

              Comment


              • #8
                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
                Diagnosed 2003
                Myectomy 2-23-2004
                Husband: Ken
                Son: John diagnosed 2004
                Daughter: Janet (free of HCM)

                Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

                Comment


                • #9
                  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!
                  Jen

                  Comment


                  • #10
                    Re: worried about having hcm with OSLER-WEBER-RENDU SYNDROME

                    I'm really happy for you!

                    Reenie
                    Reenie

                    ****************
                    Husband has HCM.
                    3 kids - ages 23, 21, & 19. All presently clear of HCM.

                    Comment


                    • #11
                      Re: worried about having hcm with OSLER-WEBER-RENDU SYNDROME

                      Wonderful news!
                      Rhoda

                      Comment


                      • #12
                        Re: worried about having hcm with OSLER-WEBER-RENDU SYNDROME

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

                        I am very happy for you!

                        Lisa
                        Knowledge is power ... Stay informed!
                        YOU can make a difference - all you have to do is try!

                        Dx age 12 current age 46 and counting!
                        lost: 5 family members to HCM (SCD, Stroke, CHF)
                        Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
                        Therapy - ICD (implanted 97, 01, 04 and 11, medication
                        Currently not obstructed
                        Complications - unnecessary pacemaker and stroke (unrelated to each other)

                        Comment


                        • #13
                          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
                          Lynn Stewart
                          HOCM 4/2002
                          Cleveland Myectomy Crew 8/2002

                          Comment


                          • #14
                            Re: worried about having hcm with OSLER-WEBER-RENDU SYNDROME

                            Jen, Equally I share everyones good wishes and happiness for you. Pam
                            Dx @ 47 with HOCM & HF:11/00
                            Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
                            Lead failure,replaced 12/06.
                            SF lead recall:07,extracted leads and new device 2012
                            [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
                            Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
                            Genetic mutation 4/09, mother(d), brother, son, gene+
                            Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

                            Comment


                            • #15
                              Re: worried about having hcm with OSLER-WEBER-RENDU SYNDROME

                              Jen,

                              Great news! You must be so relieved

                              Jim
                              "Some days you're the dog... some days you're the hydrant."

                              Comment

                              Today's Birthdays

                              Collapse

                              Working...
                              X