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Hereditary Hemorrhagic Telangiectasia prognosis

What is the prognosis if you have Hereditary Hemorrhagic Telangiectasia? Quality of life, limitations and expectatios of someone with Hereditary Hemorrhagic Telangiectasia.

Hereditary Hemorrhagic Telangiectasia prognosis


Hereditary Hemorrhagic Telangiectasia (HHT), also known as Osler-Weber-Rendu syndrome, is a rare genetic disorder that affects blood vessels throughout the body. It is characterized by the development of abnormal blood vessels called telangiectasias, which are fragile and prone to bleeding. These telangiectasias can occur in various organs, including the nose, skin, gastrointestinal tract, and lungs.



The prognosis of HHT can vary widely depending on the severity and location of the telangiectasias, as well as individual factors. While some individuals with HHT may experience mild symptoms and lead relatively normal lives, others may have more severe complications that can significantly impact their quality of life.



One of the most concerning complications of HHT is the risk of recurrent bleeding, particularly in the lungs and brain. This can lead to serious health consequences, including anemia, stroke, and organ damage. Therefore, it is crucial for individuals with HHT to receive appropriate medical management and monitoring to minimize these risks.



The management of HHT typically involves a multidisciplinary approach, with specialists from various fields, such as genetics, cardiology, pulmonology, and gastroenterology, working together to provide comprehensive care. Treatment options may include medications to control bleeding, surgical interventions to remove or repair abnormal blood vessels, and supportive therapies to manage associated symptoms.



It is important to note that HHT is a lifelong condition, and there is currently no cure. However, with proper medical management and regular monitoring, individuals with HHT can often lead fulfilling lives. Early detection, genetic counseling, and appropriate interventions can help minimize complications and improve long-term outcomes.



In conclusion, the prognosis of Hereditary Hemorrhagic Telangiectasia can vary depending on the individual and the severity of the condition. While there is no cure for HHT, proper medical management and monitoring can significantly improve outcomes and quality of life. It is essential for individuals with HHT to work closely with a healthcare team specializing in this condition to receive the best possible care.


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World map of Hereditary Hemorrhagic Telangiectasia

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Stories of Hereditary Hemorrhagic Telangiectasia

HEREDITARY HEMORRHAGIC TELANGIECTASIA STORIES
Hereditary Hemorrhagic Telangiectasia stories
With 1 in 5000 people, many more don't even know!  The sad thing I have learned about HHT is the lack of knowledge by family physicians.  I was very lucky I have a doctor who is young and learned a small amount about in medical school. I was a Ch...
Hereditary Hemorrhagic Telangiectasia stories
I began having nose bleeds at age 5, I wasn't scared because I'd seen so many family members have them. Because they became so bad I was taken to ENTs and Hematologist, where I was actually diagnosed after they examined my father. In 1993 my 2nd chil...
Hereditary Hemorrhagic Telangiectasia stories
A young child with HHT. And on the waiting list myself. 
Hereditary Hemorrhagic Telangiectasia stories
I started having nosebleeds in my 20's, but it was much later when my cousin informed me HHT runs in our family.  It hasn't slowed me down much, just nuisance nosebleeds, but as I approach 70 they are getting worse.  What I've been doing seems less...

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