Activist Bellver (Cheste, Catalan Countries, 1998) studies Law and Political Sciences to assert the rights of people with rare diseases. The UPV/EHU took part in the rare diseases conference organised at the Bizkaia Aretoa in Bilbao.

The first disease was diagnosed at 12 years of age and the last at 20 years of age, what did the process mean?

At that time, we didn't know much about rare diseases, and we didn't think much about it. When we saw that I was getting worse and that my life was in danger, I started wandering from one hospital to another.

Two of them were diagnosed in Germany, how did they experience it?

I felt sadness: I love traveling, but it was the saddest journey in my life. We went to Germany in search of hope and response, and when we went home there was a lot of ignorance, the doctors didn't know what to do with me. However, I got some peace, because naming helps a lot.

What does it mean to have to go outside?

This means that, in order not to have to go outside, we must further strengthen the research world. We have amazing experts, but many find work outside because they don't have a chance here.

You've managed most of it from public health, but have you had significant expenses?

I always say that with the money my parents have spent, I can buy a house on the beach. However, I am alive thanks to public health. I am very grateful because in general all the workers are very good. I'm many hours and I feel at home. EERRs are careers that hinder survival and health workers adapt to needs.

Do you have organic disability, do you think it goes unnoticed?

People need to see disabilities, if they don't see them, they don't understand it. When I was deaf, I realized people's change of view. "I look good to you, you're not going to be so bad." When I was deaf, they said it was a gixajo. Not all disabilities are obvious.

Happiness is conquered by the name of the conference, what do you mean by it?

People find it paradoxical that a person is happy with all the things that lead to rare diseases. We want to emphasize that happiness is in small things. The goal is to break myths: happiness is in humor, in recognition and in personal relationships.

In a Twitter video, he claimed that many say you are “heroes” and “brave”, and don’t want to say so.

That means we are fighting, but this is not a battle, there are no winners or losers. We are not fighting, we are living. On many occasions, when someone dies from a strange illness, people say they have lost the battle, if they did not have enough. Not so, diseases are like this and we can do nothing against it. We don't decide to be sick, but it's up to us to decide what we want to do with our lives.

You spread it to the networks that you've begun to wonder what you want to do with your life. Have you found any answers?

Why me? because you can't move forward. Take the backpack and go ahead with your limitations. I think with my experiences I can help a lot of people.