Malaga influencer Micaela with epidermolysis bullosa (Butterfly Skin): daily tips for 140K followers

Micaela Escobar Loisi, 24, lives with her mother in Manilva (Malaga province). She has a seemingly normal life for a young woman her age: she likes sharing photos and videos on social media, going to the beach and spending time with her boyfriend Facu.

Behind her charming smile, however, there is pain, because Mica lives with a rare skin condition called 'butterfly skin' (epidermolysis bullosa, or EB). The genetic disease impacts how she does life on a daily basis and limits capacities that others might take for granted.

It was her condition that motivated her mother to take her two children - Mica and her younger brother - and move to the Costa del Sol seven years ago, in search of a better treatment for her daughter.

Despite the challenges of living with butterfly skin, Mica has chosen to help others face the disease and adapt to their needs. With almost 140,000 followers, Mica uses her social media (@micaa_loii on Instagram and @mica_loi on TikTok) to support others with her condition and parents who might not know how to help their baby.

Her aim is to provide them with the information and useful tips that help her cope with the disease. "I make tutorials on how to make bandages, among other topics. Things that help a lot to people with butterfly skin," she tells SUR.

Like other people with butterfly skin, Mica celebrates the recent news that the Andalusian regional government will fund a treatment, called Vyjuvek, capable of healing even chronic wounds.

When Mica and her family arrived in the province, they initially settled in Marbella. That's where the headquarters of the national association supporting people with butterfly skin (Debra España) are located.

At the time, her oesophagus was damaged and she needed a specialist to dilate it. "For several years, my oesophagus got better here in Spain, but last year it started to decline. I had a surgery, but things didn't go well. Now my oesophagus is very bad and I can only feed myself with liquids and liquefied food. I can't eat anything solid, not even noodles or rice, for example," Mica says.

Mica has a busy weekly schedule of medical appointments. She spends three to four hours on treatments every day. "Sometimes I'm a bit more limited because of the wounds. I have to organise my daily life depending on how they are at that moment. For example, if I get sores on my feet, I can't walk or I can't walk long distances," she says.

"On the other hand, if I get them in my mouth, throat or esophagus, I can't swallow. It depends on where the sores are that day," Mica explains.

For Mica, her mother and her boyfriend are the two pillars of support in her life. They both accompany her to hospital appointments and they are there for her emotionally. "She [my mother] became my flesh and blood," Mica says, admiring her mother's strength to move countries and travel to find more information.

"She has also always instilled in me the importance of taking care of myself so that one day I can take do it alone. I might fall a thousand times, but she will always be there," the young woman says.

Mica highlights several advantages of the Vyjuvek treatment. "It's an ointment that helps wounds close. Healed skin is healthy skin, where wounds don't reappear for a long time," she says.

According to her, this treatment could help, first and foremost, reduce the pain. It could also reduce the time spent on treatments. "We would live with a little more peace of mind and we wouldn't have such a high risk of infections. It would change our quality of life," Mica concludes.