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Anyone have experience with HHT or Osler-Weber Rendu?
Blood Cancers & Disorders | Last Active: Jan 3 9:55am | Replies (18)Comment receiving replies
Thank you Kelly. Haven’t quite gotten the hang of this yet. Yes. I do have other disturbing symptoms. I have these small red dots internally and also visible on my face, lips, toes and fingers, and tongue. They are called Telangiectasia. Sometimes I spontaneously bleed from the ones on the surface of my skin, but most often i bleed profusely from my nose.
As I’ve aged the bleeding from my nose has advanced to a stage where I bleed so much blood, so fast for up to twenty or more minutes, that I can choke on the huge clots that form when I try to inhibit the flow in any way.there are times that I bleed like a water faucet tap turned fully on. It is scary for me and frightening for others to see. And I have to carry a big packet of tissues wherever I go. Even in my own home because there is no warning.
Replies to "Thank you Kelly. Haven’t quite gotten the hang of this yet. Yes. I do have other..."
Hello Rexie, I'm thankful for your post and wondering how you are doing, and specifically am wondering if you have had any more complications, and treatment done to the telangiectasia on the surface of your skin. I'm 63 and have had nosebleeds for many years, also anemic at times. I have a larger protrusion of what appears to be similar to a vericose vein on my lip that is called a 'venus pool' and there is a smaller red spot (HHT) next to it. Dermatologist said that even though the 'venus pool' is not direct symptom of HHT, people with the disease seem to have greater tendency to develop things like the venus pool. I'm considering pulse dye laser treatment for my lip as well as a few spots on my face, and wondering if you have any experience with that?
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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Rexie are you getting iron infusions? Sounds like you really need them.You have nosebleeds like my Sister does.
It’s heartbreaking. I’m so sorry.
Take care💛