“Suddenly I became the eccentric of the city and the class”
Iria Pinheiro, patient with alopecia areata, Sanxenxo. RAMON LEIRO
Estefania Freiria, mother of Anxo, a nine-year-old boy with alopecia areata, and Iria Pinheiro, also a patient, describe what their life has been like since they were diagnosed with alopecia areata.
August 24, 2024 . Updated at 12:28.
Iria Pinheiro has been asked on occasion if she has cancer. Estefania Freiria has too, but in relation to her nine-year-old son Anxo. In both cases, the answer has been no. They both have focal alopeciaa type of non-scarring alopecia of autoimmune origin, with varying degrees of development in each patient. “The immune system itself destroys or limits the hair follicle for some time,” the doctor explains. Iria MonteroDermatologist-trichologist at the Ribera Povisa Hospital in Vigo and member of the Trichology and Oncology Group of the Spanish Academy of Dermatology (AEDV).
It usually affects the scalp, but an attack can also damage the beard, eyebrows and hair on the entire body. The trigger has many faces: “Infections, stress, vaccines or other external factors that, in a predisposed person, cause lymphocytes to attack the follicle,” the expert explains.
Iria and Anxo have something in common, apart from the disease. They live in Rias Baixas; she in Sanxenxo, he in Vigo; and they have lived with this pathology practically since the beginning of their lives. She since she was three; he since he was two and a half. But they are separated by almost three decades of difference and enormous progress in society.
Pinheiro remembers his childhood as one with difficult moments: “The world was very different,” he notes. Soon after he started school, his hair began to fall out. It was counted in handfuls; one day one, the next another. This continued until round bald spots appeared, and his mother had no choice but to shave them off. “When I was three years old, I remembered my pigtails, my tweezers and my ties to match my clothes. Suddenly I was the oddball of the town and the class,” he laments. At the time, there was no television, no magazines, and certainly no Internet coverage of alopecia areata.
Anxo and his mother Estefania talk about what it’s like to live with alopecia areata. KOAN CARLOS GIL
“I had some bald spots, they cleared up and others appeared”
When Anxo was just over 24 months old, Estefania noticed a “mini bald spot” on the front of her head that would later become permanent. Once he visited the doctor’s office, the dermatologist had no hesitation. It was alopecia areata, and it remained to be seen whether it could be cured or whether it would become universal. “He continued to have outbreaks until he was six. He had some bald spots, they resolved, others appeared,” his mother says. They used cortisone as a treatment, and it worked, but it was too aggressive. It was time to look for other options: “I couldn’t stay like this forever. We had it removed in February, and in mid-March, in a matter of weeks, the child’s hair fell out.
The situation was complicated, but Estefanía and her family quickly saw the bright side. Alopecia areata, apart from its aesthetic impact, does not pose a health risk. Anxo visited a psychologist on medical advice, although therapy was ruled out: “He told us it was not necessary because he was very well prepared,” Estefanía notes, still on the phone.
The first year of alopecia cost him a little more: “He didn’t leave the house without a visor.” In the summer, without eyebrows or eyelashes, he had more problems with his vision: “There was no protection, he sweated a little and everything got in his eyes.” But it didn’t take long for the baby to be accepted. “When he went to camping Together with his grandparents, I said to him: “Listen, Anxo, people here didn’t know you before. From now on, he will do this.” And that was liberation for him. From then on, he no longer hid his alopecia.
Estela, diagnosed with alopecia: “It’s not that I’m a sick person, it’s that I’m bald”
ALICIA WHITE /
UR
The environment is supportive and Estefania says with relief that she has never had a seizure. bullying except for a track teammate who called him bald. “It happened a couple of times, I told him to get over it, and that was it,” he says. But he knows there are other kids who don’t cope so well.
Until her son was diagnosed, she had never given this type of alopecia much thought. “I’ve been asked a few times if the child has leukemia. And of course, no. But it makes you think about how many times you see someone without eyebrows or eyelashes, and you automatically think cancer,” he says. Now, he pays more attention. In fact, a teacher who attended her children’s school also suffered from alopecia. “I had the same thing as Anxo, and she was the one who introduced me to other people who have it.” This applies to Alopecia Association Madridof which they are members.
Anxo, a patient with alopecia areata, from Vigo. The disease manifested itself when he was two years old. KOAN CARLOS GIL
“Society must also defeat this disease”
Iria has faced the same problem time and again: having to differentiate between alopecia and cancer every time she meets someone new. “I think it’s not just the individual who has to overcome this disease, but society as a whole and understand what’s happening to us,” he says. Throughout his life, he has been confronted with doubts from both children and adults. “In my life, I remember scenes with adults worse than with children,” he says. As a patient, he admits he has had to learn to live with the constant questions and ignorance of others: “It’s logical that they ask me.” He doesn’t judge, as long as they do it with respect.
Pinheiro has gone through all the stages. From the moment she was diagnosed until she was 12, she refused to wear a wig. He didn’t even use a visor. “My friends and family had to adapt to the changes, but I did great,” he says. Anyone who wanted to hurt him knew where to attack. But that, too, although unfair, counts as a learning experience.
With the institute came new treatments and uses for this supplement. The drug is photosensitive, so sun exposure should be avoided; moreover, when I was on the verge of adolescence, “the doctor told me it would be nice to feel a little more integrated,” she says. Those who knew her before were surprised by her long hair. Some even joked about trying to take it away. But the overall memories of that time are positive: “I had friends and I felt integrated,” she details.
He kept it up until adulthood, when he started getting hives: “I get pimples; if I scratch, I get cuts. So the wig became unbearable and a year ago I decided I would not use it anymore. Since then, I have had to take it up again. “Now I usually use scarves because I don’t feel strong enough to fight society again and that people are constantly looking at me or asking me questions,” he says.
With your new one lookknows that some people have said he has cancer. It bothers him. “Sometimes people talk and it seems like female alopecia doesn’t exist.” Yes, it does, “and more than we think, we’re just used to covering up, to disguise ourselves.” This is not an argument against wigs. Quite the contrary. Pineiro says he’d use one again if he wanted to one day, but he refuses to do it as just another mask.
To raise awareness of his illness and prevent others from feeling weird, he gave a talk to his young daughter’s class this year. “I’ve had comments about some kids being ‘different.’ It was nonsense, but if you let them go, they’ll eventually become problems,” he says. In the children’s class, she reconnected with her childhood: “I told them about my experiences, we did things, and I felt very loved by them,” recalls Piñeiro, who showed that being different doesn’t have to be bad.
Lack of knowledge in Galicia
Iria never regained her hair; Anxo continues to test treatments, and the latest one seems to be working. The prognosis for this pathology depends on the case. “It is a chronic disease, there is no cure, and the patient will have outbreaks,” the dermatologist emphasizes. In some cases, there will be two episodes, and in many more severe cases, the hair will not return easily.
Health is not affected. At least, physics is not. Dr. Iria Montero emphasizes psychological impact of this pathology. “Alopecia, like almost all skin diseases, is observed and, unfortunately, society is critical of it, which affects patients,” he explains. A process that occurs, especially in women and children, and which is caused by the ignorance of society.
Estela, diagnosed with alopecia: “It’s not that I’m a sick person, it’s that I’m bald”
ALICIA WHITE /
UR
Here’s what the data shows. Survey Alopecia areata in Spain: knowledge and perception of the diseasepromoted by Pfizer, concludes that 70% of Galicians don’t know what this pathology is and 69% of participants, if they saw a child or teenager without hair, would confirm that they were undergoing cancer treatment, while 25% would confuse it with another type of dermatological disease or with regular baldness, and only 6% would think someone had alopecia areata.
Beliefs that are contrary to reality, since in 80% of cases it occurs before the age of 40, and even in 20% before the age of 18. In Spain, there are more than 8,000 patients, and it is the second most common alopecia after regular baldness.
“Children and adolescents have to deal with the onset of the disease when they are still minors, which means they have to deal with situations of misunderstanding and stigmatization in their daily lives,” says a member of the organization. AEDV. A lack of understanding that can materialize in low self-esteem or low self-confidence and that can only be addressed through education.