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Anyone have experience with HHT or Osler-Weber Rendu?
I have an inherited condition called Olser-Weber Rendu. It’s a bleeding disorder that both my mom and my grandfather died from complications of this disease. I am 62 and I am found to be anemic often. My mom died at 70.
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It was a pulmonary AVM, I had to go to St.Michaels Hospital in Toronto ..they are an hht hospital, I don't really know how they did the procedure, I believe they said they redirected the arteries, they made it so I was less of a risk from heart attack and stroke, so sorry to hear of yours, I hope they can fix them for you too
I'm tagging @amartin945 to make sure they see your reply.
@olivine, how was your recovery after the procedure to repair the pulmonary AVM? How are you doing now?
I was good after the procedure, just had to rest for a couple days then back to normal routine, just no heavy lifting for a while, I am doing OK, just feel so alone here...no one has ever heard of this and every dr or hospital I go to here, no one knows about it, it is actually a bit scary because they are unaware of how to treat this...I go for regular testing every 6 months to make sure everything is OK in Toronto
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1 ReactionHello, 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.
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?
The only treatment offered me currently is medication called oceretide for arms. They say this will relieve the bleeding and the need for iron infusions.
Currently doctors are suggesting subcutaneous treatment with octreotide a synthetic hormone that they say should help with nosebleeds and AVM in gastrointestinal tract.
Spell check gets me . For AVMs Doctors are offering subcutaneous treatment octreotide. A synthetic hormone to manage the bleeding. Waiting for insurance approval.
Hello ,
I haven't heard of the avastin. Doc recently found AVMs in my gastrointestinal tract and have suggested octreotide. I have long family history of nosebleeds and HHT too, before it had a name.
Hi I am new to the group and have HHT as well.