Discover stories of people living with chronic skin diseases

Those who live with chronic skin diseases face challenges daily. Prejudice in the professional environment, difficulty in accessing diagnosis and self-esteem problems are some of them.

Last Thursday (18) the Sheet held a seminar on skin health to discuss treatments and prejudices against atopic dermatitis, psoriasis and hidradenitis suppurativa, chronic and non-contagious skin diseases.

The event was mediated by the special reporter of the newspaper Cláudia Collucci and sponsored by AbbVie. Readers who followed the webinar shared their experiences. Read below:

‘It took me a while to get the treatment right due to misdiagnosis’

Maria Leite Bomfim, 20, Student, Teixeira de Freitas (BA)

The main difficulty in the treatment was the diagnosis. I went through several professionals who diagnosed as white cloth, a fungus infection that causes discolored spots on the skin, which led me to spend years with the wrong treatment. Finally, I was seen by a dermatologist at the SUS polyclinic, who correctly identified the skin disease as progressive macular hypomelanosis.

I’ve been treating myself for a month. At first it was difficult to adapt to the medication, because it made me feel dizzy and felt like vomiting, but now it’s calmer.

My self-esteem was greatly affected. It’s hard to wear a bikini without wondering if people will notice the stains.

‘I have three cases of psoriasis in my family, father, grandfather and great-grandmother’

Jacqueline Viana, 34, Journalist, Santo André (SP)

I have had psoriasis since I was 4 years old. My type is the common guttate, in which small plaques appear on the body. On the scalp, it is serious and has intensified with the stress of the pandemic. They say that the disease has a 25% chance of occurring when there is a case in the family. I have three: my father, my maternal grandfather and my great-grandmother.

The disease stabilized around age 7, came back in full force at age 13, and never completely went away. I underwent treatments, including a very strong one with acitretin at 16, in a kind of chemotherapy.

Today, I use topical medications and go to therapy. The biggest difficulty has been with the scalp. I’ve been using short hair for at least ten years to make treatment easier.

‘I felt ashamed when they saw the skin lesions’

Patricia Splinder, 47 Psychologist, Nova Hamburgo (RS)

I was diagnosed with chronic idiopathic/spontaneous urticaria a year ago, but I have had symptoms for four years. Since last December, I have suffered from frequent seizures. I have changed medication and doctors, but I am refractory to treatment.

I did acupuncture and I’m going to the nutritionist, but not always with improvement. I need corticosteroids more often. I’ve been embarrassed in situations where people recognize skin lesions, which made me depressed until I understood that I needed to follow through with patience and a lot of willingness. When I work too much or I’m too tired, I get worse. I continue with medication and food restriction. Maybe go for immunobiological treatment.

‘It is not a disease taken seriously’

Heloísa, 25, marketing assistant, São Paulo (SP)

Dermatitis has been with me for almost 20 years. I was diagnosed with eczema as a child, but no treatment brought any significant improvement. For many years, I used corticosteroids, ointment and pills, which helped at first, but then got worse. I tested other more expensive treatments that were said to be innovative and they didn’t help me at all. I was even abandoned in the middle of treatment by a dermatologist, claiming that my case was only psychological.

I was bullied at school, including from the teachers. I lived for many years hiding my hands, which are the most affected area, for fear of people’s reaction. Once, I couldn’t hold my pencil on a test at school because of the wounds, and I had to continue anyway, I took the exam without being able to concentrate because of the pain.

It is not a serious illness. I had to swallow a lot of crying and I came to believe that what I have is no big deal. It was in therapy that I understood that my pain is real and that, because of eczema, I stop doing many things. When traveling with friends, I always need to stress that I cannot wash the dishes unless I have a glove, but the glove cannot contain talc. Often, they think I’m fresh and that I just don’t want to do things.

I understand that there is no cure and that patience is needed. I spend more money on buying specific moisturizers, I don’t consume certain foods and I don’t use certain fabrics and products. I hope for the discovery of new effective remedies and treatments that are accessible to all. [Heloísa preferiu não informar o sobrenome]

Watch the full seminar: