← Return to Anyone have experience with HHT or Osler-Weber Rendu?

Discussion

Anyone have experience with HHT or Osler-Weber Rendu?

Blood Cancers & Disorders | Last Active: 5 days ago | Replies (30)
Comment receiving replies
@pendutchgal

Hello, I've had severe nosebleeds all my life. Have several family members, who were diagnosed with HHT, some lived long lives, some didn't. Recently diagnosed with HHT. I'm 64 and now onto gastrointestinal bleeds and figuring out potential treatment.

Jump to this post

Replies to "Hello, I've had severe nosebleeds all my life. Have several family members, who were diagnosed with..."
Lori, Volunteer Mentor | @loribmt | Mar 1 8:45am

Welcome to Connect, @pendutchgal Family genetics can be fascinating but also frightening when there is an inherited risk factor handed down through generations. A family member, somewhere along the line, was a carrier for HHT, a condition with atypical links between arteries and veins called arteriovenous malformations which can be sites of unexpected bleeding. Which you’ve certainly been experiencing with the nosebleeds and now your gastrointestinal bleeds.

There is great website dedicated to finding a cure and offering information to families with HHT.
Cure HHT https://curehht.org/

One of the suggestions they mention on their site is finding a HHT Center of Excellence in the US. Mayo Clinic is an HHT Center of Excellence and cares for many people and their family members diagnosed with HHT.

Have you considered a second opinion with Mayo? Here is a link to get you started: http://mayocl.in/1mtmR63

What types of treatments have been offered for you and your family?

VIEW AND REPLY