Donald’s Story: What We Know Can Save a Life

From his earliest memories, Donald remembers nosebleeds.

They were simply part of life. His mother had them. Some of his siblings had them. No one thought much of it. A little Kleenex or toilet paper, a few minutes of inconvenience, and then life moved on.

For years, that was the story hereditary hemorrhagic telangiectasia (HHT) told in Donald’s family: something familiar. Something manageable. Something ordinary.

Until it wasn’t.

Donald was in university when a routine chest x-ray revealed a large arteriovenous malformation, or AVM, in his lung. After reviewing his history of nosebleeds and noticing telangiectasias on his lips, a physician told Donald he had Osler-Weber-Rendu syndrome, now more commonly known as HHT.

Several months later, Donald underwent a procedure to embolize the lung AVM. But at that time, there were no clear recommendations offered for ongoing HHT care, broader screening, or family testing.

Two years later, Donald’s younger sister, Marie, who also had nosebleeds, suffered a cerebral hemorrhage from an intracranial AVM. She survived emergency surgery but later died from a re-bleed. She was only 26.

For Donald, HHT is not abstract. HHT is his family inheritance. It is his family’s grief. It is the terrible knowledge that symptoms once dismissed as routine may have been pointing to something far more serious.

Years later, Donald received genetic testing to confirm his diagnosis and was referred to the HHT clinic at St. Michael’s Hospital in Toronto, the only HHT clinic in Canada at the time. There, he began receiving the expert screening, treatment, and follow-up that every person with HHT deserves. His close family members were screened, too.

Today, Donald is grateful for the expert care his family has received in Canada, including at The Hospital for Sick Children and St. Michael’s Hospital. But access has not always been simple. For his family, specialized HHT care requires a two-hour flight from their home.

Unfortunately, that is the reality for many families living with a rare disease like HHT. The right care can change everything—but too often, it is too far away, too hard to find, or discovered only after something devastating has happened.

Still, Donald remains thankful. His anemia is being treated. He is feeling good. He is able to maintain an active life. And he understands that HHT may bring new challenges in the future.

That is one of the truths Donald wishes more people understood: HHT can change over time. Symptoms and complications may appear at different stages of life. The concerns are not only physical. They are emotional, practical, and deeply personal.

That is what awareness changes.

It helps families recognize the signs. It helps patients seek the right screening. It helps clinicians connect the dots. It helps prevent HHT from being mistaken for “just nosebleeds” until the consequences become impossible to ignore.

This HHT Awareness Month, Donald’s story reminds us why visibility matters—and why we must continue building a future where every person living with HHT in Canada can find information, expert care, and community sooner.

When you give to Cure HHT Canada, you help strengthen that future. Your support helps expand awareness, education, and connection for Canadian families impacted by HHT, so more people can recognize the signs, seek proper screening, and feel less alone in the journey.

Because what we know can save a life.

And 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.