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Anyone have experience with HHT or Osler-Weber Rendu?
Blood Cancers & Disorders | Last Active: Apr 13 11:00am | Replies (35)Comment receiving replies
Have not been tested but apparently am a carrier and have passed it on to all my children. The only symptoms I have had are nosebleeds when I was younger and the red dots on the palms of my hands, inner lips. My eldest (59) was just recently diagnosed with HHT, second (57) has had brain surgery twice; first was emergency brain bleed and second was preventative. Third (54) brain surgery to remove an avm, fourth (51) avm removed from lung. My grandson, 15, surgery next month to remove avm from brain. My Mother’s two sisters’ families have also been diagnosed with HHT and being treated for avms.
Replies to "Have not been tested but apparently am a carrier and have passed it on to all..."
Hi I'm Samantha
I'm 42 this year and my mom would be in her 70s if she was alive but she got it from her dad which would be in his 80/90s if he was her as well I've been scared away from all the findings this has and just starting too really face reality and that's only because I have too prepare my 2 children when I die. So sorry all this has happened too you. I pray my babies don't have too go through all this but only God knows. But It's my job too do my part some how. I will be praying for you, and your family. I'm so scared now, my mom was so scared that she refused too go too any Dr's. So I had no idea what I was up agaist but God has the final say. Just pray for me and my two children please thank you.
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Welcome to Connect, @lizaf Thank you for sharing your family story of members with HHT. This is incredible to have your four sons develop serious complications, requiring surgery and now a grandson. How frightening and stressful for all of you.
Were the family members who were tested all found to have the genetic mutation for HHT? What’s the treatment being offered to avoid more avms? And I just have to ask…now that you realize you may be a carrier, will you also get tested?