Which advice would you give to someone who has just been diagnosed with Hereditary Hemorrhagic Telangiectasia?

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Hereditary Hemorrhagic Telangiectasia advice

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First I would say that report seriously on the disease, contacting centers and medical reference. Not everything you see on the internet and you hear out there is true.
Being informed is the best tool.

Posted Mar 9, 2017 by Rosario Figueroa 2770

Hereditary Hemorrhagic Telangiectasia advice

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Stories of Hereditary Hemorrhagic Telangiectasia

HEREDITARY HEMORRHAGIC TELANGIECTASIA STORIES

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Hereditary Hemorrhagic Telangiectasia stories

LONG PEDIGREE OF HHT

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...

591

3/11/16, 8:49 PM by Audrey

HHT OR OSLER WEBER

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...

572

3/11/16, 4:08 PM by Kevin

GOT DIAGNOSED IN 2010. DON'T KNOW MUCH ABOUT IT. MY MAM KNOWS MORE AS IT WAS ONLY AFTER SHE HAD A STROKE THAT SHE WAS DIAGNOSED WITH IT.

520

3/11/16, 3:19 PM by Chris

MOTHER OF...

A young child with HHT. And on the waiting list myself.

510

3/13/16, 9:45 PM by L.

AGING WITH HHT

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...

349

8/16/17, 5:33 PM by rickp99

Which advice would you give to someone who has just been diagnosed with Hereditary Hemorrhagic Telangiectasia?

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