Getting Real With Shadra Bruce
I have a genetic disease, and I’m writing about it in an effort to make people more aware of it.
Osler Weber Rendu Syndrome, also called Hereditary hemorrhagic telangiectasia (HHT), is a disease of the blood vessels. It is passed down through generations. I inherited it from my dad, who inherited it from his dad. So little is known about it that I’ve had numerous doctors tell me that it’s not real.
Well of course it is, and I have the nose bleeds to prove it.
People with HHT can develop abnormal blood vessels called arteriovenous malformations (AVMs) in several areas of the body. AVMs in the brain and lungs can be deadly; these malformations can also occur on the skin. On the skin they are called telangiectasias.
Symptoms of HHT:
- Frequent nosebleeds
- GI bleeding
- Seizures or unexplained, small strokes (from bleeding into the brain)
- Shortness of breath
- Port Wine Stains
While many people with HHT have a few symptoms that are nothing more than a nuisance (having a nosebleed that won’t stop for a half an hour is never fun, no matter where you are), there are serious complications that can occur, depending on where the AVMs are in the body. Anyone who has a history of HHT in their family should be genetically tested.
Those who have HHT should have brain and lung scans to screen for AVMs.
I’ve seen the devastation HHT has caused in my family, and while it only affects 1 in 5000, it’s a disease that deserves more attention by the medical community.
HHT Resources:
HHT Treatment Centers
