Hailey Waldo
Riverbend News
For many people, a medical diagnosis brings uncertainty. For Charyle Hale, it brought a cascade of life-changing challenges that continue to impact every aspect of her daily life.
Over the past year, Hale has faced not one, but multiple serious health battles. A Live Oak native for 55 years, Hale was diagnosed in February 2025 with Hereditary Hemorrhagic Telangiectasia (HHT), also called Osler- Weber-Rendu disease, a rare genetic disorder that affects the body’s blood vessels. An estimated 70,000 people in the United States have HHT; however, medical experts estimate that up to 90% of people with HHT are unaware they have it. The condition led to pulmonary arterial hypertension and right heart failure, leaving her dependent on oxygen and connected around the clock to a medication pump that helps keep her alive.
Then, just months later, another devastating diagnosis followed: Triple Negative Breast Cancer, one of the most aggressive forms of breast cancer. Today, Hale is navigating both conditions simultaneously while working to raise awareness about HHT, a disease that many people have never heard of and one that she says even some healthcare providers know very little about.
HHT is a genetic disorder that causes blood vessels to develop abnormally. According to the Centers for Disease Control and Prevention (CDC), HHT occurs when certain blood vessels fail to form properly, resulting in fragile, abnormal connections between arteries and veins.
Normally, blood flows from arteries into tiny blood vessels called capillaries before moving into veins. In people with HHT, those capillaries may be missing or malformed, creating direct artery-to-vein connections known as arteriovenous malformations (AVMs). These abnormal blood vessels can be fragile and prone to bleeding.
HHT affects men, women and children of all races and ethnic backgrounds. Because it is a genetic disorder, it can be passed from parent to child, and it takes only one altered gene to cause the condition. Hundreds of different genetic mutations have been linked to HHT.
One of the challenges of HHT is that symptoms and complications can vary dramatically, even among members of the same family.
“There is no cure for HHT,” Hale explained. “But early diagnosis and proper treatment can make a huge difference.”
The most common symptom of HHT is frequent nosebleeds. These occur because abnormal blood vessels that develop inside the nose can rupture early. People with HHT may also develop small red or purplish spots called telangiectasis on the face, lips, mouth, fingertips, hands and nose. These spots often lighten temporarily when touched. However, some of the most serious complications are not visible at all.
Abnormal artery-vein connections can form in the lungs, brain, liver and digestive tract. Bleeding in the stomach or intestines can lead to chronic anemia and other complications. AVMs in the lungs and brain can become life- threatening if left untreated.
What makes HHT especially dangerous is that many people may have no warning signs before a serious complication occurs.
“The scary part is that many people don’t know they have it until something major happens,” Hale said.
For Hale, HHT triggered a series of severe cardiovascular complications. To explain what happened, she breaks the condition down into simple terms.
“To put it simply, HHT is when your veins and arteries are tangled up, so your body isn’t getting enough blood flow,” she said. “That causes the right side of your heart to work overtime. That gives you pulmonary arterial hypertension, which then leads right to heart failure.”
Pulmonary arterial hypertension is a serious condition in which high blood pressure develops in the arteries that carry blood from the heart to the lungs. Over time, the increased strain causes the right side of the heart to enlarge and weaken.
As her condition progressed, Hale became dependent on oxygen because her oxygen levels frequently dropped dangerously low. Today, even everyday activities can become exhausting.
“I’m constantly in and out of the hospital,” she said.
One of the most critical parts of Hale’s treatment is a specialized medication delivered continuously through a pump attached to a central line near her heart. The medication helps manage her pulmonary arterial hypertension and supports her body’s ability to function.
The treatment is lifesaving, but it also creates significant risks.
“Every day, a pump delivers medication through a central line to keep me going. It’s a constant reminder of my changed reality,” Hale stated.
Because the medication must be delivered continuously, any interruption can quickly become dangerous.
“One of the scariest things is when I go to the hospital and medical teams don’t know about my condition. The line attached to my pump goes directly to my heart,” Hale said.
She worries about healthcare providers who may not be familiar with the specialized treatment requirements associated with pulmonary arterial hypertension and HHT.
“If they disconnect my line, I could die within two hours,” Hale said. “If they inject something into that line that isn’t supposed to be there, it could kill me.”
The fear of a medical mistake is something she carries with her every time she seeks emergency care.
“All I can keep reiterating is that it is terrifying,” Hale declared.
Beyond the physical and mental toll, the financial burden has been overwhelming. The medication delivered through Hale’s pump costs approximately $2,000 per month. While insurance covers part of the expense, the out-of-pocket costs remain substantial.
Frequent trips to Gainesville, Fla., for specialized medical care add another layer of financial strain. Medical appointments, hospital stays, medications, travel expenses and time away from work have placed tremendous pressure on the family.
Just as Hale was learning to manage her rare disease and heart failure, she received another life-changing diagnosis. In November 2025, doctors informed her she had Triple Negative Breast Cancer. Unlike many other forms of breast cancer, Triple Negative Breast Cancer lacks the three receptors commonly targeted by hormone therapies, making treatment more difficult and often more aggressive.
“It is the most aggressive form of breast cancer,” Hale said.
Since Hale’s diagnosis, she has undergone chemotherapy, radiation treatments and surgery. Her treatment continues through immunotherapy, which has created additional health challenges. “The immunotherapy makes me extremely sick,” she said. “I’ve been in and out of the hospital because of it.”
The effects of Hale’s illnesses extend far beyond her own health. Her husband has worked tirelessly to support the family while balancing employment that often requires him to be away from home. At the same time, he must remain prepared to respond to medical emergencies.
The emotional and financial strain eventually led to the loss of the family’s home. Currently, Hale and her husband are staying with relatives as they work to rebuild their lives.
“It’s been rough, but we remain hopeful,” Hale said.
The family has also been coping with additional medical challenges involving loved ones. Hale is the mother of Miranda Clayton, Gage Clayton and the mother-in-law of Ernie Clayton, who recently underwent a heart transplant.
“So much has happened at once, it’s really been rough on the entire family,” Hale stated.
Despite the physical pain, emotional stress and uncertainty she faces daily, Hale says one of her biggest goals is helping others learn about HHT. Because the disease is rare, many patients who have been going to the doctor for years, searching for answers, are not receiving a diagnosis in a timely manner. Even after diagnosis, finding knowledgeable medical providers can be difficult.
She believes greater public awareness and more education within the medical community could help improve outcomes for future patients.
“There are still so many people who have never heard of HHT,” Hale said.
According to the CDC, HHT can often be diagnosed through genetic testing or by evaluating a patient’s symptoms and family history. While there is currently no cure, treatments are available to help control bleeding, manage anemia and prevent complications caused by abnormal blood vessel connections.
Early diagnosis is especially important because potentially dangerous AVMs can exist in the lungs or brain without causing symptoms.
“If one person reads this and learns about HHT, then sharing my story is worth it,” Hale said proudly.
Every day presents new challenges for Hale. Between managing a rare genetic disorder, living with right heart failure, depending on oxygen, enduring cancer treatments and facing repeated hospitalizations, her journey is one of extraordinary resilience.
Yet through it all, she continues to speak openly about her experiences in hopes of helping others understand a disease that is often overlooked.
“Sharing our story is not just about seeking support,” Hale said. “It’s about raising awareness. Your understanding and kindness mean the world to us as we navigate this challenging time.”
As Hale continues her fight against HHT, pulmonary arterial hypertension, right heart failure, and Triple Negative Breast Cancer, friends, family and the community are rallying around her during one of the most difficult seasons of her life.
Those who would like to offer support to Hale and her family can donate via her Cash App at $charyle1989 or her Venmo at @Charyle-Gaskins.
Whether through a financial contribution, a prayer, a message of encouragement, or simply sharing her story to raise awareness of HHT, every act of kindness makes a difference. Hale’s courage in the face of this overwhelming challenge can inspire many, and community support can help ease the burden as she and her family continue this journey one day at a time.
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