Global HHT Awareness Day
Hereditary Hemorrhagic Telangiectasia (HHT) and Global HHT Awareness Day.
As some of you may know from our more recent blogs, it is important to shine a spotlight on rare diseases. Rare diseases may only affect a small population compared to more common conditions. But when you add up everyone affected by a rare disease, the community is massive. At Personalized Cause®, we believe in the power of awareness and the strength that comes from unity. Like Helen Keller said, “Alone we can do so little, together we can do so much.”
Many people with rare diseases feel isolated or misunderstood. They often wait years for an accurate diagnosis. Even after that, finding treatment or support can be a challenge. Awareness helps change that. When more people understand rare diseases, patients feel seen. Families find support. Researchers gain funding. Awareness builds connection, spreads hope, and drives action.
Red and Blue Ribbon for HHT
At Personalized Cause®, we’re proud to now offer a red and blue awareness ribbon for HHT, also known as Hereditary Hemorrhagic Telangiectasia. We’ve added two red and blue enamel ribbon pins to our collection—one standard and one that can be customized with a name, date, or short message to honor someone personally affected. This small but meaningful symbol can help bring attention to a rare condition that remains underrecognized, even in many medical settings.
What Is Hereditary Hemorrhagic Telangiectasia (HHT)?
Hereditary Hemorrhagic Telangiectasia (HHT), sometimes referred to as Osler-Weber-Rendu Syndrome, is a rare genetic disorder that affects the blood vessels and can cause abnormal bleeding in multiple areas of the body. The disease is often misunderstood or overlooked because its symptoms can mimic other, more common health issues. In fact, the average time it takes to receive an accurate diagnosis is a staggering 27 years. Many patients suffer for decades without knowing the root cause of their health challenges. This is one of the key reasons why Global HHT Awareness Day is so important—it helps bring recognition to this condition and shortens the diagnostic journey for others.
Common Symptom: Nosebleeds and Telangiectasia
One of the most common symptoms of HHT is frequent nosebleeds, experienced by up to 90% of those living with the condition. These are caused by malformed blood vessels in the lining of the nose called telangiectasia, which can also appear on the skin and in the gastrointestinal tract. These vessels are fragile, and when they rupture, they cause bleeding that can range from mild and occasional to severe and persistent. The appearance of telangiectasia often goes unnoticed, especially since the tiny red spots they create may be hard to see without magnification. Unfortunately, because nosebleeds are common even in healthy individuals, this symptom is often dismissed by doctors, delaying proper diagnosis. That’s why spreading accurate information through Global HHT Awareness Day is so critical—it empowers patients and educates medical professionals alike.
AVMs: The Most Serious HHT Complication
While nosebleeds are the most visible symptom, HHT can lead to much more serious internal complications due to arteriovenous malformations, or AVMs. AVMs occur when arteries and veins connect directly without the usual capillary system, disrupting normal blood flow and oxygen exchange. These malformations can appear throughout the body, including in the brain, lungs, liver, spine, and even the heart.
Brain AVMs
When present in the brain, AVMs may lead to neurological symptoms such as seizures, headaches, or muscle weakness, and in more severe cases, they may result in stroke, vision problems, or impaired speech. Brain AVMs affect roughly 23% of people with HHT, and because they can remain silent for years, screening is recommended even in the absence of symptoms.
Pulmonary AVMs (PAVMs)
Pulmonary AVMs, or PAVMs, are even more common—affecting nearly half of all HHT patients. These malformations lower oxygen levels in the blood, causing fatigue, shortness of breath, and a bluish tint to the skin (cyanosis). PAVMs also pose a serious risk for embolic strokes, which occur when clots, bacteria, or air bubbles pass through the lungs and travel to the brain. For this reason, individuals with PAVMs must take extra precautions such as receiving antibiotics before medical procedures and avoiding activities like scuba diving. Global HHT Awareness Day helps highlight these important safety steps.
Liver AVMs
Liver AVMs are found in approximately 75% of people with HHT, although only 10% of those experience symptoms. AVMs can mimic signs of liver disease and, in more advanced cases, can lead to heart failure due to increased stress on the cardiovascular system. Treatments may include medication to manage symptoms or, in severe cases, liver transplantation.
Heart and Arrhythmia Concerns
When liver AVMs put strain on the heart, arrhythmias or heart rhythm disorders can develop. These are often managed with medication and dietary adjustments, such as reducing sodium intake. While liver transplantation remains a last resort, it can offer life-changing improvement for those severely affected.
Spinal AVMs
Spinal AVMs are rare, affecting only about 1% of HHT patients. However, they can cause serious complications such as nerve damage, numbness, chronic pain, difficulty walking, or spinal hemorrhages. Most individuals begin showing symptoms in childhood or adolescence. This is why early awareness and diagnosis—supported by campaigns like Global HHT Awareness Day—are essential for timely care.
How HHT Is Diagnosed
To diagnose HHT, physicians use a set of four clinical criteria:
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Recurrent nosebleeds
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Visible telangiectasia
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AVMs in internal organs
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A first-degree relative with confirmed HHT
If three criteria are met, a definite diagnosis is made. If two are present, the diagnosis is considered possible. Because symptoms may increase with age, someone initially classified as “possible” may later meet the full criteria. Genetic testing and family history are important components of diagnosis, and Global HHT Awareness Day encourages families to advocate for proper screening.
The Emotional Toll of Living with HHT
Living with HHT can be emotionally and mentally exhausting, especially when patients are misdiagnosed or feel misunderstood. Because the disease is rare, many people—including some healthcare providers—may not know enough about it. This lack of awareness can lead to missed opportunities for early treatment or support. Global HHT Awareness Day provides an opportunity to elevate patient voices and increase understanding within both the public and medical communities.
Awareness Starts with a Ribbon
At Personalized Cause®, we believe that small actions can make a big impact. Wearing a ribbon, sharing a story, or even posting a simple fact on social media can raise awareness and support those living with HHT. Our red and blue HHT awareness ribbon is more than just a pin—it’s a symbol of hope, advocacy, and solidarity.
Explore HHT and Rare Disease Resources
Our website offers extensive awareness resources, especially for rare and genetic conditions like HHT. You can visit our “find your ribbon” section to search by cause, color, or category. Our master list includes updated information about each cause, including ribbon colors and brief descriptions. We work continuously to ensure accuracy, since ribbon meanings can change over time. This is part of our long-standing commitment to being a trusted source for awareness and education.
Why Global HHT Awareness Day Matters
Global HHT Awareness Day is more than a day on the calendar—it’s a reminder that awareness saves time, saves lives, and brings communities together. By increasing recognition and understanding, we can help those affected by HHT receive the support, diagnosis, and care they deserve. With knowledge comes power—and with power comes the ability to change lives.
Sources: CureHHT / MayoClinic / CDC / NORD
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