FEATURE | A long journey in search of a diagnosis

It took Lance Pelletier several years and multiple medical tests to discover what was taking over his life. Today, he wants to share his journey and offer help to others with the same condition.

By RANDY SEAVER | Editor

A little more than five years ago, Lance Pelletier of Saco began experiencing some troubling health symptoms that he could not explain.

It started with a tightness in the jaw, then later turned into re-occurring nausea, dizziness and numbness in his arms and legs.

Pelletier, 42, says he was in otherwise good physical shape when the symptoms started, but then things started getting worse. So, he did what most people would do, he made an appointment to see his doctor.

**LANCE PELLETIER** has become an outspoken advocate for those living with HHT, a rare blood disease | *Randy Seaver photo*

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What followed was what Pelletier describes as an odyssey of diagnoses and various treatment options, none of which seemed to work.

It took more than three years to discover the source of his health issues, which now included frequent nose bleeds and the effects of a tinnitus, a condition that causes the perception of ringing in the ears when no external sound is present.

Pelletier and his doctors tried a number of fixes, but nothing seemed to explain what was really happening.

Pelletier said the problems intensified, impacting his performance at work and taking time away from his wife and two young daughters.

He was referred to a neurologist and was tested for both multiple sclerosis and Lyme disease. But there were no conclusive results from the MRI examinations.

“I would wake up in the night after sleeping only two hours, and I couldn’t get back to sleep again,” he said. “I was getting really worried. Nobody could tell me what was happening. I started fearing for my life.”

Pelletier underwent sleep studies and consulted with chiropractors. He was referred to a specialist at Mass Eye & Ear. He was tested for stroke symptoms and underwent angiograms.

Pelletier had studied journalism in college. Ultimately, he had to use those journalism instincts to discover his own diagnosis.

“I had to ask myself, what do you pay attention to and what’s just another symptom?” he said. “I had basically given up on getting a diagnosis.”

Pelletier had begun noticing small red spots on his tongue and lips.

And then he became increasingly worried when he noticed the same type of red spots on his daughter’s tongue.

Finally, Pelletier was connected with a hematologist – Dr. Andrew Rogers — who was able to offer a diagnosis.

Pelletier was diagnosed two years ago with Hereditary Hemorrhagic Telangiectasia (often abbreviated as HHT).

HHT is a genetic disorder that causes abnormal, fragile blood vessel connections that often lead to frequent nosebleeds and gastrointestinal bleeding.

According to medical experts, HHT is often unrecognized and misdiagnosed.

Visible Together

**A FAMILY THAT FINALLY HAS ANSWERS** | Lance Pelletier and his wife, Danielle, pose with their daughters, Isabelle and Emelia | *Facebook photo*

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Today, Pelletier has become an advocate for those living with HHT. He is working to increase awareness and to build support for people impacted by the disease.

“Some people have HHT and show no physical symptoms,” he explains.

Pelletier is promoting the public awareness and research work of CURE HTT, an online resource and advocacy organization dedicated to finding a cure for HHT.

There are roughly 80,000 people living with HHT in the United States. Globally, that figure climbs to 1.6 million.

“It’s sort of frustrating that more people don’t know about this illness,” Pelletier says.

Pelletier runs a Facebook group – Fight HHT with Me – to help raise awareness and offer resources for people impacted by the illness.

“It can be sort of invisible,” he explains. “Often, people are not diagnosed until they are in the late 20s.”

Today, through his advocacy work and research, Pelletier is connected with advocates and fellow patients from around the world.

He says he relies on the support and encouragement of his wife, Danielle, a teacher at the C.K. Burns School in Saco.

Although he is not aware of any family history, the disorder is genetic and his oldest daughter, 15, has also been diagnosed with the illness.

Pelletier takes pride in some of his work to raise public awareness about HHT, sharing his experience in a Feb. 2025 visit to Washington, D.C., where he was able to meet with members of Maine’s Congressional delegation, including Sen. Susan Collins, a leader he describes as a “champion for treatment and diagnosis of HHT.”

“I try not to think about feeling better,” Pelletier says. “I just have to be present with what I feel today.”

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