What is it?
Hereditary Hemorrhagic Telangiectasia (HHT) is a genetic disorder of the blood vessels, which affects approximately 1 in 5,000 people. It affects males and females from all racial and ethnic groups. The disorder is also sometimes referred to as Osler-Weber-Rendu (OWR)
What are the main symptoms?
Sadly 9 out of 10 people who have HHT have not been diagnosed, and as someone who knows all the symptoms too well, I can’t help but pick up on them with friends and so forth.
Here are the Symptoms:
1. NOSEBLEEDS, spontaneous and recurrent.
2. TELANGIECTASES, multiple, at characteristic sites including lips, oral cavity, fingers and nose.
3. INTERNAL LESIONS such as: Gastrointestinal telangiectasia (with or without bleeding), Pulmonary AVM, Hepatic AVM, Cerebral AVM, Spinal AVM, Multiple AVMs, etc.
4. FAMILY HISTORY- a first degree relative with HHT according to these criteria.
The HHT Diagnosis is:
- Definite if 3 criteria are present
- Possible or suspected if 2 criteria are present
- Unlikely if fewer than 2 criteria are present.
here is the HHT website with all the information on symptoms. So if you have these, or know someone else who has them, please see a doctor/ inform them to see a doctor who is aware of the condition and can give you a diagnosis. If you click in the links at the top of the website it is easy to find more information about HHT.
Location: World wide.
Latest Activity: May 12
My wife's family is historically from the region comprising eastern Germany / Poland, where HHT is prevalent (we're in Southern Maryland right now), and her Mom had it, and her brother and nephew…Continue