“I hope that we are getting nearer to finding a treatment for Stargardt’s Disease”
Interview with Mireia Moscardó. The Institut de la Màcula is conducting a pioneering trial
Mireia Moscardó is 28 and is a technical architect. Two years ago, she was diagnosed with Stargardt’s disease and her life went backwards. With a deterioration in her visual function of 60%, she is faced with a major obstacle in the exercise of her profession. She is also obliged to adapt her daily tasks to a new reality that took her by surprise. But Mireia’s strength and willpower remains intact. She is seeking work and has been selected for a pioneering clinical trial that attempts to halt the impact of the disease. As there are few lines of research in the world, this project is a window of hope.
How did you become aware of the disease?
I was diagnosed with the disease around two years ago in a routine check-up. I thought my myopia had got worse but then the doctor told me that there seemed to be something more at the back of my eye. When the disease was confirmed, I started to read up a lot. All I wanted was to find out more and more.
How has this disease affected your personal and professional life?
My personal life hasn’t changed too much. It’s a matter of adapting as I lose sight like, for example, using more light when I read and choosing books with quite a large text. I’m also ruled more by touch when, for example, I try to distinguish between coins.
Professionally, it has affected me more. I was fired from my job after I was judged “unfit” following a medical. However, I haven’t given up hope of working. There are a lot of companies that hire you if you have some type of disability. In fact, I’ve just been for an interview, in the knowledge that I have the disease. If I get the job, it will be as a certified disabled person.
What made you take part as a volunteer in a clinical trial?
When the Institut de la Màcula gave me the opportunity, I said yes immediately. Not just for my sake, but for the future generations who suffer this type of degenerative disease. Being able to help is something that also motivates me emotionally.
Do you think that participating in this trial gives you the chance to be closer to a treatment if the new medicine proves a success?
Yes, it’s an opportunity to be among the first people to gain access to a new medicine. I hope that we are getting nearer to finding a treatment. If the trial works, it will be fantastic news and if it doesn’t, we will have learned new things that will help us to keep making progress.
What would you say to other people who are considering participating in a trial?
Firstly, I would recommend them to find out about how the treatment works, how long it lasts and where they have to go. Mostly so they can get organised. I would also tell them to complete all the phases of the trial.
How do you value the work performed by the Barcelona Macula Foundation and the Institut de la Màcula?
It’s very important that someone is conducting research. In addition, all the doctors and professionals who we have seen have been really good to the participants in the research. It isn’t a painful process but it’s a long one.
What are your most immediate projects?
I wouldn’t like to miss out on any job opportunity just because I have this disease. But if it’s necessary, because I can’t work as an architect, I would try to find something else to do, something I like equally.