My life with amyloidosis

My name is Vitor Ferreira, I’m 52 years old and I’ve had symptoms of this mutation since I was 39 years old. When I learned that I had the disease, despite knowing that there was a possibility of having it, as I saw my father suffer a lot and gradually weaken, I was paralyzed, in shock, as if at that moment, a death sentence had been issued that would occur in soon in my life. After a few days of great sadness and bitterness, knowing that even unintentionally I could have passed this disease on to my children, I had to get up and go back to living and look for a treatment or a solution in every way possible at the time, even if temporary, to have a life without any physical weakness.Well, I tried the transplant, but I didn’t have the courage at the time of roll call, because when they call you, a movie plays in our heads and I just thought about not having the opportunity to be alive with MY CHILDREN, who are EVERYTHING to me . So I looked with the help of Dr. Teresa la from Portugal who referred me to a doctor here in Brazil who was and still is a reference in the study of paramyloidosis as a palliative treatment, but the difficulty of getting medicines at the time was too great, I spent more than a year to start receiving the drug and when provided it did not come monthly, sometimes it was missing, which led me to look for a study that was available at the time, and I was able to enter the study of the drug, which today is a drug with greater efficacy and what keep me alive.In the middle of this walk I have already developed some weaknesses, such as Atrioventricular Block, requiring the use of a pacemaker, neurogenic bladder, making permanent use of a urinary catheter, I have difficulties in walking, but I am very grateful to the doctors and laboratories who were and are committed to the fight for cure of this evil. And I say with all my heart: There is no effective medication, if there is not also psychological support with the patient, because we have passed at a certain point of this disease, from self-employed people to dependents. and the family, the medical team is essential at these times. But I tell everyone who may be reading it. NEVER GIVE UP, BECAUSE OUR ANXIETY TO LIVE AND WANT TO BE WELL, TOGETHER WITH THE TREATMENTS AVAILABLE TODAY, MAKE US HAVE A MORE DIGNIFIED LIFE THAN OUR ANCESTORS HAD. ALWAYS HAVE A LOT OF STRENGTH. Note: This one next to me in the photo, is my son, and unfortunately of 5 children he is the one with the mutation. Sorry my son, I LOVE YOU And I have great hope that you will soon have a much better treatment than we have today, or even a genetic repair so that everyone who has this mutation will never live with this disease again…

My life with amyloidosis – Vitor – Brazil