Hi, i'm Caz i have hht, avm's and related conditions as do two of my children. I was diagnosed a few years ago. Since then I have wanted to see more support for people living with this condition and set about doing something to help. With help from family, friends and others I have met though hht we set about starting hht uk.
I hope you find the website useful. Information on this site was gathered from a number of different sources and rewritten in a way I felt was easy to understand.
To provide information and support to those with HHT, their families and loved ones.
To raise awareness for HHT and related conditions.
To support our medical professionals in research and treatment of HHT and related conditions.
To fundraise to assist in awareness, research and education.
Hereditary Hemorrhagic Telangiectasia, is a genetic condition that affects 1 in 5,000 people many of whom have not been diagnosed yet. Hht affects the blood vessels within our body, its affects can range from mild to life threatening. No two people with hht will be affected the same. Some people have lived their whole life without meeting another person with this.
Our aim at hht uk is to change this; to bring people together to support one another and through that raise awareness of this condition so sufferers don't have to go without help and knowledge.
Who is behind hht uk
Simply people with hht, their families, friends and loved ones. You can read some of our personal stories if you click on learn more scroll down to Our Stories or you can chat to many of us on facebook group 'hht uk friends'. Here is a photo of just some on the faces behind hht uk.