Paciente Manel

My name is Manel, as you can see I am proud to attach the José Carreras Foundation's logo on my photo.

Almost four years ago, my life changed radically.  For my 50th birthday, life presented me with chronic myeloid leukaemia.  The week of my birthday, I had some analysis in preparatoin for an operation I needed after fracturing my collar bone during the Catalan Minibike Tournament.  I had been competing for 2 years and during that time I had suffered various falls, some of them quite dangerous ones, but I had never received so much as a scratch.  It seems silly that fate caused me to fracture my collar bone, and that is what saved me.

You can imagine how many images, unanswerable questions and feelings fill you head and stop you from thinking clearly when you receive news as big as: "you have leukaemia".   You are overcome by desperation and grief and thinking that the disease is too difficult to beat.  Each haematological disease is different and each one requires a different method to reach a remission.  In some forms of leukaemia, like in my case, the disease becomes chronic which means I will have to take medication all my life.  However, there are other types of leukaemia which require the patient to receive chemotherapy, or radiotherapy and/or a bone marrow transplant.  In order to realize a transplant and to enable these patients to continue living, it is necessary to find a donor of the stem cells found inside the bone.  This search for a compatible donor is as difficult as finding a needle in a haystack, as the possibilities are very slim. However, they do exist and for that reason it is important to make people aware of the need to increase the number of donors and to make sure they are informed well about how to become a bone marrow donor.

I was offered the possibility of participating in a 5 year clinical trial and I didn't have to think twice.  The trial was designed to compare two medications which aimed to control CML; one was already on the market (imatinib) and the other was still pending approval from the Spanish Authorities (nilotinib).  A few years ago, nilotinib was approved for the market.  I was assigned to the group of patients who would use the new drug and thanks to that decision; I am now able to write this testimony.

The worry that me and my family have been through has caused us to look at the world in a different way.  No one is exempt from risk and every moment and situation is important.  We need to search for the good things that we have and enjoy the most precious thing we have: "life".

Since my diagnosis I have etched a phrase about the future in my mind:

"Yesterday is gone, tomorrow has not yet come, the only thing we have is the present. Today is ours and we shouldn't waste it".  Every day, when we wake up we have a new page in the book we about to write. At the end of each day we can write with our pen that "today has been a good day".

As you can see I do not have many plans for the future to explain.  I live in the present and try to know the people around me and appreciate what I have.  We never know what lies ahead, I lived thinking about the future and the scare caused by the disease helped me to appreciate what I have today.

I want to encourage you to fight, to face up to the disease and to use your low moments to reach your goals.  You can beat it, despite the many obstacles that will appear on the way, the ultimate aim is to win!

Thanks to the José Carreras Foundation; to their website; to their forum and to the people in their office.  I have had the pleasure of visiting the Foundation and I have shared my highs and lows with many people.  The Foundation is doing great work.  I want to thank everyone for everything!

Webpage updated 07/09/2019 16:37:22