Q&A with Lauren:
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: Lauren: My mom was diagnosed with HHT, but I didn’t really understand what that meant. Growing up, nosebleeds were just part of everyday life. My mom had them, I had them, and we didn’t think much about it.
It wasn’t until my son started having nosebleeds and I began researching HHT that everything clicked. That’s when I realized it was more than just nosebleeds. That’s why my mom had strokes. That’s why we needed imaging and screenings. That’s when I understood how serious HHT could be.
Q: What was daily life like living with HHT?
A: Lauren: I would wake up in the morning and automatically give myself 15 to 20 minutes to stop a nosebleed. If I got too hot, I could have a nosebleed. If I was outside in the Florida heat, I could have a nosebleed. It was at least three nosebleeds a day, and they could last 15 to 20 minutes.
I carried tissues everywhere—in my purse, in my car, anywhere I could fit them. I always had to think ahead and be prepared because I never knew when a bleed would happen.
Q: How did HHT affect your work and daily responsibilities?
A: Lauren: It had a bigger impact than I realized at the time. I was a general manager at a fast-food restaurant, and the job was hot, fast-paced, and constantly moving. Every time I got overheated or pushed too hard, I would start bleeding.
Eventually, I realized I needed to make a change. I left that field and moved into work that was less physically demanding because I knew I couldn’t continue doing the job the way I wanted to.
Even outside of work, I found myself planning activities around HHT—whether it was being outside in the heat, attending my kids’ events, or managing appointments, scans, and iron infusions.
Q: How has HHT affected your family?
A: Lauren: I’ve seen HHT across three generations of my family. My mom experienced serious complications, including strokes related to AVMs [arteriovenous malformations], and my son also has HHT.
Because I didn’t have a full understanding of the disease when I was younger, I’ve worked hard to make sure my son has the information and support that I didn’t have. I want him to be able to advocate for himself and understand what HHT means for his health.
Q: What do you wish more people understood about HHT?
A: Lauren: It’s more than just a nosebleed.
It’s the fatigue. It’s the anemia. It’s the AVMs. It’s the testing, the scans, the appointments, and everything that goes into managing it. It affects how you plan your day and how you live your life.
People see a nosebleed, but they don’t always see everything happening behind the scenes.
Q: What do you hope for the future—for yourself, your son, and others living with HHT?
A: Lauren: I’ve seen what HHT can look like across generations. My mom has experienced serious complications, and my son has HHT as well. I want a different future for him.
I hope for more education—not just for medical professionals, but for the general public. If my family had better information earlier, I think we would have understood the disease much sooner and been able to advocate for ourselves earlier.
I also hope people continue to support research and clinical trials. I didn’t realize how much HHT had affected my quality of life because it was all I’d ever known. The more awareness, research, and treatment options there are, the better the future can be for people living with HHT.
I want my son—and the next generation of patients—to have more knowledge, more options, and a different trajectory than the generations before us.
Link here to learn more about Hereditary Hemorrhagic Telangiectasia (HHT)