Eduardo’s story

Eduardo Froes 

My mother began to notice that by the time I was seven months old, I appeared very pale compared to another baby, Thiago, who looked much rosier. Concerned, my mother decided on her own to have my blood tested in our town, Cruzilia. The test was done in the morning, and by the afternoon, the lab called my mom and asked her to go back there. They told her, "Edu's hemoglobin levels are very low and he needs an immediate blood transfusion."

My name is Eduardo Froes and I've been living with thalassemia major for 44 years.

At the time, to remove the spleen was the standard protocol. By that time I was four years old. I arrived in Rio at the age of four already somewhat decompensated by the disease. Then the diagnosis was revealed: "Your son Eduardo has thalassemia major. It's a rare disease. It primarily affects Italians from the Mediterranean Sea and the life expectancy is very poor. To improve his chances of survival, we need to remove his spleen."

So my spleen was removed when I was four and I was given a grim prognosis. At the time, my mother was advised not to get too attached to her son because the life expectancy was very low.

A doctor named Luiz Cláudio came to Cruzilia. My mom said, "Let's go to this doctor! He's a young pediatrician, let's see what he has to say." I was already 12 years old.

When we arrived at his office, he said, "I've studied thalassemia. I've never treated it, I don't know how to. But whatever I can do for Edu, I will do."

He later called my mom and said, "Mrs. Celina, I want you to come see me because O Estado de Minas newspaper published something about a camp for thalassemia patients."

At that camp, I met Merula, an incredible woman. If I am here today, I owe it to her because she brought a paradigm shift at that time. I was a person sentenced to death, but when she saw me, we started talking.

She was still very young, and unmarried and she said, "No, you don't have to be afraid. We're going to get along very well. And you're going to be a very special person."

I touch people's lives by bringing them encouragement, showing them that life is very beautiful. No matter how painful it is - because we have to be honest, it's not easy to live with an illness, a chronic illness that requires blood transfusions every 15 days.

But despite all these challenges, life is very beautiful. And we must - as Merula used to tell me, "Take care of yourself, Edu. Be ready for new technologies and new medicines. There's a lot of new stuff coming onto the market." She used to say, "There's a medicine coming that will reduce the need for blood transfusions."

That was tremendously thrilling, because imagine needing 3 red blood cell concentrates and then suddenly needing only one concentrate every 20 days. Imagine the improvement in quality of life, think of how much it benefits you, as a chronic patient.

This is what the thalassemia community in Brazil does today. It spreads the message that life is beautiful and that we need to live with quality of life.

And I want to take this moment to tell all BMS employees about the importance of your work. You are on the cutting edge, studying these technologies, developing these molecules, dedicating yourself to the innovative side of science. Science is fantastic and your work has a profound impact on people's lives, which is priceless.

My life today is dedicated, like some kind of priesthood. It’s a 24-hour-a-day commitment to fighting so that people have the support they need, so that people really have a sense of warmth, a word of affection, of encouragement, of love.

It's important for all of us, thalassemia patients and patients of all other rare diseases as well to have this support network. I've always had a great support network. I often say that my mom was a hero. I was with her this week and as she caressed my face, she said, "How can it be that you are here? It was (...) It was so hard."

That's why the support network is so important, it makes you believe that it is possible, and we must value life and believe even when the challenges are immense. We must overcome them.