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Extremely Rare Bleeding Disorder of the Month – Bernard–Soulier Syndrome – EHC

EHC/LinkedIn

Jun 17, 2026, 16:11

Extremely Rare Bleeding Disorder of the Month – Bernard–Soulier Syndrome – EHC

European Haemophilia Consortium (EHC) shared a post on LinkedIn:

“Extremely Rare Bleeding Disorder of the Month: Bernard–Soulier Syndrome (BSS)

Most of us never think about how our blood clots when we get a cut, but for people with BSS, that process simply doesn’t work the way it should.

BSS is an extremely rare, inherited condition that affects platelets — the tiny cells in your blood that help stop bleeding.

In people with BSS, platelets are missing a key ‘docking protein’ on their surface, which means they can’t attach properly to the walls of damaged blood vessels.

Think of it like a boat with no anchor: the platelets are there, but they just can’t hold on where they’re needed.

People with BSS may experience:

Frequent or hard-to-stop nosebleeds
Easy bruising
Very heavy menstrual bleeding
Bleeding gums
Prolonged bleeding after injuries, dental work, or surgery

Another clue that doctors look for: people with BSS tend to have fewer platelets than normal, and the ones they do have are unusually large, which can actually make diagnosis tricky.

Because BSS is so rare, many people wait years before getting the right diagnosis. Better awareness means faster recognition, access to specialist care, and personalised support — all of which can make a huge difference to someone’s quality of life.

Want to learn more?

Visit the ERIN Focus Area on the EHC Community website to explore webinars, podcasts, and publications on extremely rare bleeding disorders”

See more in the gallery.

Extremely Rare Bleeding Disorder of the Month - Bernard–Soulier Syndrome - EHC