Visible Together: Kelsey’s Story
For much of Kelsey’s life, HHT was there before it had a name.
It was present in the kitchen, where her father stood over the sink with severe nosebleeds, bleeding into a red Solo cup. It was hiding in her family’s medical history, even though no one fully understood yet. It was like an ominous cloud—quiet, familiar, and deeply influential in all aspects of life.
Kelsey was diagnosed with hereditary hemorrhagic telangiectasia, or HHT, when she was 11 years old.
“Thank goodness the pieces were put together,” she says.
That diagnosis mattered. Not because it made HHT easier, but because it gave her family a way to understand what had been happening—and what could happen next.
For Kelsey, HHT did not follow the version of the disease that many people expect. Her nosebleeds were relatively mild. But HHT is not just nosebleeds. It is a complex, multi-system genetic disease that can affect the blood vessels in the lungs, brain, liver, gastrointestinal tract, and beyond.
Kelsey’s HHT mutation contributed to pulmonary arterial hypertension (PAH), a serious condition involving high blood pressure in the arteries between the heart and lungs. She also developed microscopic gastrointestinal bleeding, which worsened as her PAH worsened. Over time, anemia became one of her most serious complications—not because of nosebleeds, but because of bleeding that was much harder to see.
The two diseases fed into one another. Each made the other worse.
Eventually, Kelsey needed a double lung transplant.
This is what invisibility can cost someone.
HHT is often minimized because its most recognizable symptom—nosebleeds—can seem ordinary from the outside. But recurrent, unexplained nosebleeds are not something to dismiss. And for many patients, the most dangerous complications are not visible at all until they have already caused serious harm.
Kelsey understands this personally. She also sees it professionally, in her work with HHT patients.
She hears it in the voices of people who call for help after being dismissed. She hears it from patients whose symptoms were minimized, whose complications snowballed, whose care might have looked very different if someone had recognized HHT earlier.
“It’s in the worried tears and shaky voices of patients talking to me on the phone asking for help,” she says. “It’s truly heartbreaking. It doesn’t impact just the affected person; it affects a whole circle.”
That circle includes parents, children, siblings, spouses, caregivers, clinicians, researchers, and every person who has sat beside someone they love, waiting for answers that should have come sooner.
For Kelsey, Visible Together means changing that.
It means HHT patients being loud and proud about their diagnosis. It means providers, researchers, caregivers, and families talking openly about the challenges of this disease. It means education, research, and advocacy working together—because no one part is enough on its own.
HHT requires coordinated, specialized care because it does not stay neatly in one lane. One organ system can affect another. Symptoms that seem separate may be connected. Patients need multidisciplinary teams who understand the nuances of this disease and can work together to prevent complications, not just respond to them.
“The goal is mitigating the effects of HHT,” Kelsey says, “and the hope is to cure it.”
That hope is why visibility matters.
Your support of the Visible Together campaign helps Cure HHT continue the work that changes lives: educating families and future practitioners, expanding awareness, supporting expert care, and advancing research toward better treatments and, one day, a cure.
Kelsey wants donors to know that HHT may already affect someone they know—even if they do not know it yet.
That is why this campaign matters.
When HHT becomes visible, patients are believed sooner. Families are screened earlier. Clinicians know what to look for. Research moves forward. Lives can change.
Today, on Global HHT Awareness Month, we can make sure fewer people live under an unnamed cloud.
Together, we can make HHT visible.
This HHT Awareness Month, we are Visible Together because visibility changes what is possible.
Your gift to Cure HHT helps support the education, advocacy, research, and expert care that move this community forward. It helps more providers understand HHT. It helps more patients find answers. It helps build a future where rare disease care is not defined by isolation, but by connection, knowledge, and hope. Thanks to a generous group of donors, a significant portion of gifts made during HHT Awareness Month will be matched.