It was the 23rd November 2000, and I was on the verge of achieving my life-long dream of becoming an airline pilot. I executed my approach and landing at Barajas Airport, Madrid, on my final Airbus A-300 flight simulator training at Iberia’s pilot training centre. I was now ready for the real thing, but it wasn’t to be. Shortly afterwards, I began to feel constantly exhausted and I went to see my doctor; and so began the merry-go-round of hospital visits and grand tour of different clinics and specialists.
I had lots of tests done on me; blood analyses, several electromyograms, MRI scans (with and without contrast agents), and three biopsies. The phenotypic diagnosis came back quick enough, some 6 months after starting this process. I had a rare disease, the cause of which was unknown. Unknown, not because the doctors were doing a bad job, but because my condition is very rare, even as far as rare diseases go – and, of course, there is no known cure for it either.
I suffer from a degenerative muscle disease (facioscapulohumeral muscular dystrophy or FSHD) that little by little paralyses me. Just to give you an idea: I went from being able to fly in Iberia’s flight simulator, handling all the emergencies procedures that a pilot could face, to not being able to get up from a chair without climbing all over the furniture or with the assistance of two others to help me get up. As the condition deepens, my uncertain future, ironically, has very certain evantualities…
From the moment I became ill, through all the tests and hospital visits, even when I was given the diagnosis and prognosis, I only cried once. That was when I saw my grandfather cry when he was told about my fate. It was then that I realized that I’m not the only one suffering from my disease. That’s also one of the big problems of any disease (even if it might seem incidental); it not only affects the person suffering from it, but also everyone around.
I know my story is a bit hard and it might seem sad, but nothing could be further from the truth. It’s true that I cannot live my life in the same way as other people of my age, do all the things that they do. However, for different reasons, I’ve also been able to do things that they don’t do. For example, I was a pilot before knowing about my disease, but since then I’ve travelled to many places. I’ve studied abroad (in Germany and USA), I’ve been out partying with my friends, I belong to a Falla (a group of people who help organize and participate in Valencia’s famous Fallas festival) and, little by little, I’m achieving the goals I’ve set for myself.
Before knowing anything about my disease, I always thought I should have a Plan B and that’s why I started studying economics while I pursued my pilot’s dream. So, although this condition may have denied me my pilot’s license and continues to destroy my muscles, I won’t let it defeat me. I have a degree in Economics and in Business Management and Administration. I hold an EFPA certification, I recently passed the third level to obtain my CFA certificate (pending accreditation), and I have a working knowledge of several languages.
This is a hard disease to live with, but it helps you get to the know yourself better; to recognize your limits and learn that, no matter how difficult it is to achieve the things you believe in, you have to fight for them and not wait for someone to solve your problems for you. And that’s why I’m here.
I always thought about what I could do to improve my situation and the most practical answer was:
“If I want to be cured I need scientists to do the research, but what am I willing to do to make that happen?”
Obviously, as with anyone in my situation, I don’t want to be sick, I want to stop being sick and the sooner the better. However, INDACEA has not been created for me or my disease. Like me, there are many other people out there who suffer from diseases or injuries that are probably very different from mine. But, we all share a common thing:
We want to be healthy
There are many examples that prove that medical research into a certain disease has positive affects for others and that in the medium to long term everything previously discovered for one disease ends up being used for others. That’s why INDACEA is not only focused on my disease, not even on rare diseases, it focuses on all diseases. INDACEA is an opportunity to get involved and achieve what we want:
That’s where we are now, and I say “we” because I’m not alone. As well as my family and friends, there are more people and associations that support us.
Founder of INDACEA
P.S. Nowadays, I’m still flying, but from the comfort of my own home, and I can go wherever I want.
I would like to dedicate this personal message to Stephen and Rafa. I didn’t know them personally, and I only learnt about them last year, but I think they are (and many other people who suffer from this and other diseases) an example of what we are trying to express.