Story about Hereditary Hemorrhagic Telangiectasia .

HHT or Osler Weber

Mar 11, 2016

By: Kevin


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 Christmas gift to him. I educated him more, but he had an open mind to listen!!

My father and my grandmother both have/ had it. I have seen my father suffer dearly over the years since I was a small boy. The lack of knowledge in the 70's and 80's made in suffer.

Today he is living because of the treatment at the HHT Clinic in Toronto at St Michael's Hospital. The best one in Canada. 

My advice to anyone and everyone; you get nose bleeds, headaches, low iron, shortness of breath....plus so much more..... Tell your doctor about HHT.

HHT is only passed on thou you mother or father... just because they seemed normal, does not mean you may not have HHT. IT AFFECTS EACH FAMILY MEMBER DIFFERENTLY. ( My father bleeds from the nose nearly daily. I don't bleed from my nose ) I am in the 5% who don't get nose bleeds....I am very rare. 

Any question, send me email. I will try to answer to the best of my knowledge.

Kevin

 

Know someone who should read this story? Share it

0 comments

Login or register to leave a comment


Hereditary Hemorrhagic Telangiectasia cure

Does Hereditary Hemorrhagic Telangiectasia have a cure?

Do I have Hereditary Hemorrhagic Telangiectasia?

How do I know if I have Hereditary Hemorrhagic Telangiectasia?

Prevalence of Hereditary Hemorrhagic Telangiectasia

What is the prevalence of Hereditary Hemorrhagic Telangiectasia?

Latest progress of Hereditary Hemorrhagic Telangiectasia

What are the latest advances in Hereditary Hemorrhagic Telangiectasia?

Couple and Hereditary Hemorrhagic Telangiectasia

Is it easy to find a partner and/or maintain relationship when you hav...

Hereditary Hemorrhagic Telangiectasia sports

Is it advisable to do exercise when affected by Hereditary Hemorrhagic...

Hereditary Hemorrhagic Telangiectasia prognosis

Hereditary Hemorrhagic Telangiectasia prognosis

Hereditary Hemorrhagic Telangiectasia is also known as...

Hereditary Hemorrhagic Telangiectasia synonyms