Long pedigree of HHT

---

I began having nose bleeds at age 5, I wasn't scared because I'd seen so many family members have them. Because they became so bad I was taken to ENTs and Hematologist, where I was actually diagnosed after they examined my father. In 1993 my 2nd child was diagnosed with a AVM in the left frontal lobe and I then learned about the scary side of the disorder. My whole family came together and gave our DNA to Duke University where they were able to locate the ENG1 gene mutation. That was a wonderful moment for my family. I have had my eye bleed, a 6cm PAVM embolized along with grafts and several cauterizations of my nose, along with lip and tongue bleeds. This disorder can be traced back from my great, great grandmother and continues to affect  even the youngest of our family. Back then no one understood the disease but connections were made quickly to nosebleeds and those suffering from brain bleeds, and mysterious cancers. My great grandmother died at age 47 from a nosebleed that wouldn't stop. I pray for a cure and am grateful for the awareness being raised to educate physicians, medical providers and families.