Anyone have experience with HHT or Osler-Weber Rendu?

Posted by rexie @rexie, Jul 10, 2020

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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@drewb

I have exactly the same condition and my parents did , my sister does and her daughter. And my daughter has to get iron shots and blood transfusions. I go for iron treatments yearly. We all have HHT. My brother who died at 70, actually went to the hospital for days. He had his nose cauterized so many times that it ruined the inside of his nose. My gastrologist performed the basic tests (stomach & colon) had me swallow a camera and actually saw bleeding in my small intestine.

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Welcome @drewb and @dpmoot.
@dpmoot, I found this information about pulsed dye laser treatment from the website that @kchugg11 recommended.

– Pulsed Dye Laser Treatment https://curehht.org/resource/pulsed-dye-laser-treatment/

Did you decide to do the pulsed dye laser treatment on your lip?

@drewb, what is being done for the bleeding in your small intestines?

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