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.

Hi. My name is Heather. I am 55 yo and have suffered with severe nosebleeds since I was a young child. My grandfather and his generation of HHT suffers told my mom in the 1970's not to let them cauterize my nosebleeds (by old-school traditional cauterization). That just created more and more scar tissue in their nasal cavities and new blood vessels grow and bleed anyway.
In the mid and late 1980's, I had YAG laser treatments every month in Minneapolis for several years. That really helped lessen the bleeds and the laser did not create scar tissue.
About age 50, I finally started seeing the HHT specialist at Mayo Clinic in Rochester, MN.
I now get infusion therapy treatments of a generic or biochemical similar med to Avastin. The treatments have been LIFE-CHANGING for me. There are also other options of treatments or trials being studied for HHT. I wonder if the cauterization you get now is similar to the YAG laser treatments I used to get. I tried to request laser cauterization from an ENT 10-15 years ago and he said they only use it in very severe cases and only completely under with anesthesia.
Best of luck to you!

Let me officially welcome you to Connect, Heather, though I see you’ve been a member for a few years. Thank you so much for sharing your experiences with HHT. The advancement in treatments is remarkable and I’m so happy you’ve finally found the some relief from the chronic nose bleeds! I can certainly understand how life changing this must be for you. I had unpredictable nose bleeds for a short while as a side effect to a medical condition under treatment. I can only imagine having that be a chronic condition and the impact on daily life.
I’m tagging @amartin945 to make sure she sees this positive post intended for her!

Thank you again popping in to the conversation! Would you be able to share the name of the infusions you’re receiving?