Q&A with Allan:
What Life Is Like with HHT
The following Q&A has been edited and condensed for length and clarity.
Q: When did you first learn you had HHT?
A: Allan: It was easy to get diagnosed because there was already a deep family history. My grandmother, my great uncle, my mother, and my uncle all had it. I probably got my first nosebleed that I can remember somewhere between four or five years old. It was never spooky or anything because my mom had always had pretty bad nosebleeds, too. We went to the pediatrician, and he looked inside my nose and saw AVMs and said, “Yeah, he’s got it too.”
Q: What was it like growing up with HHT?
A: Allan: My entire adolescence was really about just managing nosebleeds. There’s social implications, timing implications, it’s embarrassing. I definitely remember the first nosebleed I got in grammar school; it was in second grade. I bled on the desk. And then the teacher, nurse, and principal all had advice – put your head up, put your head down, pinch it, don’t touch it. As a kid, you don’t know how to say, “I already know what to do, just let me handle it.”
Q: How did things change as you got older?
A: Allan: The bleeds got stronger and longer. I didn’t really have downstream issues when I was younger, no anemia or weakness. I was just a regular kid. I played baseball, I ran, I did normal stuff. But later in life, that changed. I got diagnosed with anemia in my mid-40s. That was a game changer. I started daily iron, and I just could not believe the difference. My running speed improved by a full minute over two weeks. It was amazing. I just felt so much stronger.
Q: What are your nosebleeds like today?
A: Allan: I had one this morning, and it lasted about a half hour. But I’ve had them last over an hour. There was one at Trader Joe’s that was really bad. I locked myself in the bathroom because I couldn’t find the right spot to pinch it. It turned out the AVM was almost at the tip of my nose. After about 45 minutes I figured it out. Then it took another 15 minutes to stop and another 10 to clean up. I was getting nervous like, “Someone’s going to knock on the door.”
Q: What tends to trigger them?
A: Allan: Any type of bending over, changes in temperature or humidity, getting into or out of a shower, jumping into a cold pool, blowing your nose. They come and go in waves. Some weeks I’ll have a bleed every day, and then other weeks I won’t have any.
Q: Do your nosebleeds affect how you move through the world or your relationships?
A: Allan: Back when I was dating, it was a huge thing. How gross is this going to be if I’m kissing a girl and then I have a nosebleed? The anxiety just builds up. It was horrible. I would use all these tips I got from my uncle just because I was afraid something bad would happen.
Q: Has it been hard talking about it socially?
A: Allan: Yeah. I had to explain it to my friends after an incident at a bar where I had a really bad nosebleed and had to leave. I went through everything — what HHT is, what my genetic variant is — just to make sure they knew I wasn’t screwing around. People sometimes assume things when you get nosebleeds, and I didn’t want that misunderstanding.
Q: When it comes to HHT, what’s your hope for the future?
A: Allan: I’m so hopeful that at some point there will be something that helps — even if it’s not for me, for my kids. Anything that can reduce bleeding or slow the progression would be incredible. I feel like people are finally starting to attack the source of the disease instead of just the symptoms, and that makes me very hopeful. I feel like we’re on the right track.
Link here to learn more about Hereditary Hemorrhagic Telangiectasia (HHT)