About me

Hello, I'm Isaura.

I'm 41 years old, I was born in Venezuela, I grew up in Portugal and I've been living in the United Kingdom for many years. I left Portugal whilst still young, looking for new opportunities, new challenges and the possibility of building a different life for myself. The United Kingdom ended up becoming the place where I developed a large part of my adult and professional life.

I'm a nurse by profession and a naturally curious person. Throughout my life I've studied quite different areas, including Economics and Administration, Psychology and Nursing. I've been working in the health sector for many years and I've built a career that means a lot to me.

I've been living with Parry-Romberg Syndrome since childhood. It's a rare disease that has caused visible changes to my face and that, inevitably, is part of me and my story. Throughout my life, my appearance has influenced some experiences and even some opportunities that were denied to me. But I've also learnt that what someone sees when they look at me doesn't determine my abilities, my worth or what I can achieve.

Outside work, I like reading, travelling, watching a good series, going out, dancing, eating well, laughing and enjoying the simple things in life. Friendships occupy a very important place in my life; some have been with me since childhood, others arrived along the way and others were left along the way.

I'm a daughter, sister, friend, nurse and so many other things before being a diagnosis. I studied, worked, travelled, built friendships, faced difficulties, had extraordinary moments and others I'd rather not repeat. In short, I lived and continue to live.

I created More Than My Face because I finally wanted to bring these two parts together in the same space: to talk in a serious and informed way about a rare disease that few people know about, but also to show the life that exists beyond it.

Over the years I've learnt that a visible difference can make some people see a face first and only then seek to know the person. This project was born precisely from the desire to reverse that order.

My face is part of my story. But there's a whole life beyond it.