Each story is unique, and what makes it valuable is YOU.


Copyright Daniel McCullough

Have you ever thought of sharing your life’s story as an HHT patient?

Do you measure how valuable your life story and your experiences are for the world?

When we suffer from a disorder we often feel lonely and isolated. However, many of us suffer from HHT and it is by working together that we can find effective solutions to improve HHT patients’ daily lives.

As we know, sharing our experience is essential to living better with a chronic disorder. The more we talk about it, the more we can change things. Here are some reasons why you should share your story:

Step back, put things into perspective

Talking about your disorder enables you to take the time to acknowledge everything that happened to you and your loved ones, how it made you feel, what you did, and the way the experience(s) influenced your present life.

Sharing an experience leads to more objectivity and it is also an opportunity to explore things in a way we haven’t thought of so far.

Breaking the silence related to a rare disorder is crucial to feeling liberated and overcoming the feeling of loneliness or helplessness.

Inspire others, show that it is possible, because yes, you did it! 

Not only do you help and heal yourself through a therapeutical approach, but you will inspire and support others by sharing your unique experience. And what makes it unique is precisely YOU.

Do you remember the last time you felt really alone with a struggle in your life? What if someone told you at that time that things were possible, that you could make it because they did?

Now you have the chance to be this person for someone else by sharing your story.

Change things

HHT is a rare disorder, which means that we need to raise awareness to make this disorder known by more people.

By participating in writing our story of HHT we create more information and show the world that we matter.

Together we have the power to change things.

You can send us your story to

We can’t wait to read it!

Why not read some of the incredible patient stories HERE  – We hope they fill you with positive energies and courage!