Hello @rexie and welcome to Mayo Clinic Connect. You’ve come to the right place to talk with people who have similar experiences with health and to get support from members who understand what you are going through.
I just wanted to let you all know that I changed the title of this discussion so that it reflects the discussion topic a bit more. It will help other members to see the discussion at a glance, and join in here. The new title is – "Anyone have experience with HHT or Osler-Weber Rendu?” Hereditary hemorrhagic telangiectasia (tuh-lan-jee-uk-TAY-zhuh) (HHT), or Osler-Weber-Rendu disease, is an inherited disorder that causes abnormal connections, called arteriovenous malformations (AVMs), to develop between arteries and veins. The most common locations affected are the nose, lungs, brain and liver.
As we wait for other members to respond, I was wondering if you can share a little more about your experiences? Besides being anemic, are you experiencing any other symptoms? Have you been able to be seen by a provider or specialist yet?