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Anyone have experience with HHT or Osler-Weber Rendu?

Blood Cancers & Disorders | Last Active: 5 days ago | Replies (30)
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@olivine

I also have HHT and no one seems to know anything about it here, just feel so alone in this battle, I would love to connect with anyone else living with this disorder, I don't have hardly any information about anything...I am 66 and diagnosed 2 years ago. I have had an AVM and had that repaired last year...please add me to any discussions regarding HHT

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Replies to "I also have HHT and no one seems to know anything about it here, just feel..."
amartin945 | @amartin945 | Jul 20, 2024

I have HHT. How did they repair your AVM? I have multiple bleeding AVM'S. I am also Ida and have iron infusions every 2-3 months.

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pendutchgal | @pendutchgal | 5 days ago

Hi I am new to the group and have HHT as well.

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