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Julieta Gonzalez says her left leg was as different as she could remember. It all started when he was just six months old: his parents noticed a “huge” bruise covering his twin. They thought it was a simple blow, but over the years they realized that it was not something temporary.
As she grew, so did that twin, and at the age of seven it seemed almost impossible to ignore the difference between one leg and the other.
“I felt pain when I was playing with my friends, and I got hit accidentally. The pain was not normal, it was more intense. At that time I had started playing hockey and I remember a hit with the ball on my calf that forced me to stop because the pain was unbearable. As time passed, everything intensified and became less bearable,” recalls Julieta, from the Reconquista district of Santa Fe.
Since then, he and his mother and father have been touring Rosario, Corrientes and Santa Fe in search of a specialist who can guide them on a possible diagnosis. However, everywhere they received the same response: It was a benign hemangioma and they had to wait for it to fully develop before they could do anything about it.
A benign hemangioma is a non-cancerous tumor that forms as a result of abnormal growth of blood vessels. It is common in children, appears in the first weeks of life and usually grows first and then shrinks until it disappears without treatment. Although they can vary in size and leave marks after involution, they are generally not hereditary and there are several types depending on their location, such as infantile, vertebral or bony.
“But the pain started to get stronger. Cramps, like glass inside the leg. This caused blood clots to calcify. I had blood clots several times. I felt tired and frustrated, and often useless because I was restricted from standing, walking, exercising, and going to events. I felt so much pain that I cried. I was always raising my leg so the blood would flow well. My parents didn’t know what to do or what to say to me either because they had already done that. I had surgery twice and it started to grow back again. Another time when I was ten years old, I already felt constant pressure, and I asked my parents to give me massages to relieve the stress of exercise, but I always suffered.
A dermatologist friend at Reconquista put him in touch with Dr. Cristobal Babendick, who specializes in venous malformations. Giulietta says she felt hope for the first time.
“We didn’t know surgery would be necessary, but when we had the consultation, they told us yes. The procedure was to cut the veins that weren’t working and sew them up. I don’t think anyone had wanted to operate on me before because they didn’t know how to treat the problem and had never seen a case like this before. They didn’t want to take the risk.”
In 2013, she underwent surgery and the following year she underwent a second intervention. The surgeries were successful and my life changed: I can move normally, exercise and walk. I felt very comfortable, the pain went down by 80%, it was still kind of sensitive, but it allowed me, in a way, to exercise. I started doing things I had never done before. “I resumed my sports activities at school and started going out to parties with due diligence, although the pain did not completely go away.”
However, it did not take long for the nightmare that had tormented her since she was a child to once again stop her daily routine, aspirations and those dreams that many have during adolescence.
“Discomfort, pressure and feeling cramped. Standing became increasingly difficult. I went to parties and ended up crying in pain, and walked up the stairs in my house while sitting. I didn’t know what to do or who to turn to.”
At the beginning of 2025, when he was 24 and living in Rosario, a new doctor told him there was no solution, and that he should quit. He prescribed strong painkillers and explained that he would live with this for the rest of his life. That afternoon Giulietta left the office crying.
“I felt frustrated, hopeless, giving up and tired. I couldn’t answer anything because I was so emotional I let my father do it. My eyes were already filling with tears, but I held back.”
After that sad event, her father looked at her face and said: “Don’t come here anymore. Let’s go to Buenos Aires.” And so they did.
“We contacted again the team that had operated on me years before, this time with Dr. Miguel Amore. As soon as he saw my leg, he knew what to do. He explained to me that a sample had to be taken for analysis in Belgium and gene therapy was started, but we had to operate first. I felt relieved, although later I had to fight with social work that did not want to cover the surgery.”
For Giulietta, those days became torture. They and their parents suffered from the frustration of facing social work’s indifference and waiting for answers that seemed to have been invented only to further complicate their situation.
“They never wanted to take charge, not even today. I felt a deep mix of anger and sadness, because it seemed like they didn’t care at all about my health. During those months my life completely stopped; Every thought, every decision, revolved around that surgery I so desperately needed. I was overcome with intense sadness, lacked energy, and spent most of my time at home because going out meant facing the paralyzing pain. I stopped doing everything that was good for me, like walking or seeing my friends, and that also consumed me from the inside. Meanwhile, all we had to do was wait… but the answers never arrived,” he says in pain.
After endless days full of waiting and despair, of doubts that clouded her mind, of disappointments that weighed on her soul, of exhausting battles and constant pain that seemed to have no end, Julieta was finally able to take that long-awaited trip with her family to Buenos Aires. There, between nerves and hope, he was able to take that vital step: he was able to undergo the operation he desperately needed, a moment that marked the beginning of a new chapter in his life.
Giulietta underwent surgery to remove as much of the deformity as possible, along with a biopsy for genetic study. The goal was to reduce the deformity as much as possible so that it could be better controlled with medications.
Thus a new diagnosis emerged: Fibro-adipose vascular anomaly (FAVA) It is a rare and painful vascular disease that causes a lump to form in the muscle, usually in one limb. In this condition, healthy muscle is replaced by fibrofatty tissue and abnormal blood vessels, causing severe pain, cramps, and difficulty moving the affected area. It is usually diagnosed in late childhood or adolescence through ultrasound and MRI. FAVA responds poorly to conventional treatments and usually requires specific treatments such as physical therapy, surgery, or special medications.
“The pain is finally gone and I am very happy. I can stand, walk and exercise and not feel pain, which is what I wanted most. Moreover, the size has been completely reduced. Currently, I am taking medication so this does not form again.
How did your life change after the operation?
It was before and after because this time there was a final solution and it was not just removing the deformity but analyzing it and then continuing with drug treatment so that it would not happen again. I can now practice physical activity, stand longer, and not feel cramps.
What are the things that everything you’ve been through has left you with it?
Lots of physical and mental flexibility. He taught me to check in with my health frequently. It also made me realize that there are people who are having a hard time and others who are not.
Juliet’s story teaches us the importance of perseverance and hope in the face of adversity. It reminds us that although the road is difficult and the uncertainty seems endless, we must never give up in the search for solutions and support. His experience also highlights the value of family support and resilience to turn pain into strength and move toward a better future.