Does anyone have HHT? Hereditary Hemorrhagic Telangiectasia

@amartin945, welcome. I'm tagging @jacquilogan @lizaf @drewb @kchugg11 and others who have talked about HHT (hereditary hemorrhagic telangiectasia) so they can share their current treatment approaches.

You may also be interested in this related discussion:
- Anyone have experience with HHT or Osler-Weber Rendu?
https://connect.mayoclinic.org/discussion/bleeding-disorder/

Amartin, what treatments are you on or have you done? How are doing?

I am currently seeing a ENT Dr. for my nosebleeds. He will cauterized the AVM'S that are bleeding in my nose. I have going to the cancer ctr since 2019 for iron deficiency anemia due to internal bleeding. Because I was also having nosebleeds also this entire time which was not being addressed, I decided to go to ENT Dr. and was diagnosed as having HHT. He referred me to the HHT Center of Excellence in Augusta, GA. Iron infusions and cauterization of sinus is my only treatments. Which I do about every two months. The center in Augusta discovered AVM'S in my sinuses, a few in my liver and a few in my lungs. I now have a few in my colon. I also have an enlarged spleen. My platelets are low so I can not take any medicine that is a blood thinner. My cardiologist ran tests on my heart and cat scans. I do not have AVM'S there.