“I was one step away from dying from liver failure”.

The first time I got an x-ray and I took her to the doctor, the injury went unnoticed. However, it was evolving and year, when I went for the second time to consultation, the head of the femur is had deformed: instead of being a perfect sphere, was rough and Oblate. They told me that the bone had suffered a necrosis, i.e., is dying.

Specialists failed to explain what was due, but warned me that he would have to undergo a hip replacement surgery. Indeed, a year and half the situation it became critical. The femur is shattered, and the pain became unbearable. For me it was very complex because he worked in the commercial area of a company of industrial equipment and Office required me to travel continuously.

In fact, one night before exiting towards Puerto López to the delivery of an engine, joint made, I could not walk and I had to contact a colleague to have me fill. That made me take the decision to operate on me.

The speech was apparently successful; put me the prosthesis and I had no complications in the operating room. However the postoperative was terrible. Normal would have been that a week he could walk, but I spent two months in bed because it was very bad, very weak. Hemoglobin is me down so much that they had to do me a blood transfusion to control anemia.

Shortly afterwards they began the liver problems; I got yellow and with any effort felt that I drowned.

Doctors began to worry and did me all the tests imaginable: laparoscopias, biopsies, spinal tap, etc. They walked by dozens of hypothesis and discarded from alterations of sugar to leukemia. Unless a doctor, after bone marrow aspiration, detected Gauchers Disease. I was informed that it was a rare pathology, had no reverse and unfortunately it there was no cure. Thereafter, only could give me some medicines to relieve symptoms.

I started to figure out on my own all what he could about the disease. I wanted to know what expected me, what was my prognosis; until then I only knew his name. The research was difficult because there was no Internet and did not know anyone who had gone through the same and with whom could share what was happening to me.

Asking medical friends and reading materials that lend me I understood what it was. My cells lack the code of instruction they need to process and produce a few enzymes, which in turn are responsible for unfold a molecules. As this process does not occur, the substances are deposited in the cells and organs begin to malfunction.

In the commotion that I experienced, I felt lucky because the disease attacked me adult; in children it is supremely severe and many of them do not exceed the first decade of life.

Of course, it was very hard to know that there was nothing that could be done. My children were still young and it terrified me think not them it would grow, graduating, I could not help my wife to take them forward. In addition, at that time my work was very competitive. I had to travel across the country and arrived dead of each meeting. I never left to fulfill my obligations, but it was a truly Titanic work.

On the other hand, my health was deteriorating every day. The spleen had regrown and was about to die of liver failure. I was so desperate I tried all kinds of alternative methods: I underwent neural therapy, Chromotherapy, magnetic field management, session of relaxation with dodecahedra … until I got the wisdom teeth because a doctor told me that this would help me! And Yes, I felt a little improvement, but my body still very deteriorated.

Fortunately, in 1992, I learned that in United States it had created a drug to treat Gaucher’s disease. For me, that was the light at the end of the tunnel.

I immediately contacted the lab that produced, some representatives of the company visited me in Bogotá and gave me much information. Argued it with my doctor treating, she documented on the drug and we begin proceedings to bring him to the country, because it had not been approved by the Invima.

This was not easy. I spent more than two years pending permits and approval of treatment, but months after start it my health gave a back and all clinical parameters were regularized.

Today, after 16 years, led a normal life; liver returned to its original size and the spleen occupies a quarter of what came to be measured. I felt so vulnerable that I thought that it would not exceed it, but here I am, my illness I only remember two times a month when I have to treat me ”.