My great-grandfather was from Braga and died with this disease.
When he was incapacitated, unable to work and to support his children, he sent my Grandfather to an inner college in Lisbon where he stayed until he turned 21.
My grandfather had two brothers, one of them also died with Paramyloidosis, but the sister never had any symptoms of the disease, which led us to believe that he did not inherit the gene or developed a late form of the disease.
It was Professor Corino de Andrade who diagnosed Paramyloidosis to my Grandfather at Sta Maria Hospital. At this point someone did to my Father the hammer test on the knees to check the reflexes and then told him that he would not have Paramyloidosis.
My father married and went to Mozambique due to the colonial war, where I was born 23 years old, and without symptoms.
When we returned to Lisbon over the years he started with intestinal and digestive problems, numbness in the feet and continued weight loss. Despite these symptoms and signs, he always believed that it was something he had brought from Africa, malaria style, or some other illness.
I remember watching all sorts of weird treatments, with clays, saunas, and all sorts of dishes, but the doctors' opinions never interested him.
But the truth is that these treatments came to nothing and it got worse and worse until at the age of 31 he was admitted to the hospital because the kidneys had stopped and then he was officially diagnosed with Paramyloidosis.
I can only imagine what it must have been to be finally confronted with a reality that in my opinion was always present in your thought like a Pandora's box that opens at last, a secret fear revealed and now come true, at a time when there is no Any cure or treatment for this disease.
But the worst thing in my opinion was the feeling of helplessness followed by revulsion as he watched his only son grow up and know that because of him one day I too could have such bad luck.
So definitely my Father only lived for me and for me.
My parents' relationship deteriorated as the disease progressed.
He and I were very close by now, and I felt like he did not have much time left.
I remember talking a lot about all sorts of subjects, tried to instruct me, it was an intensive course of life and things given by someone who knew he was about to leave this world.
One day in one of these conversations he asked me if in case I had the disease I would find him guilty?
I answered and I'm glad I did it, that No!
I would never find you guilty of anything.
It was one of the most beautiful things I ever said in my life and it rests my heart to have done it.
Anonymous