Nayeli's story
Nayeli Gajardo
Sydney, Australia
14 years old
Suffers from Atopic Dermatitis (Eczema)
I was 6 months old when the doctors told my parents that I had a sickness called eczema (atopic dermatitis). At first, they used to put creams on me and the eczema would go away, I lived happily with my family, and my big sister Itzel.
When I was 7, I got sick, like really sick. The creams did not work on my eczema anymore, my skin was very itchy and dry, I was in a lot of pain. I could not move, so my Papi carried me everywhere.
I went to hospital, the nurses and doctors did everything but I just got worse. They had to get Big Doctors to help me, Professor Dedee Murrell (Head of dermatology at St George Hospital and Professor at University of NSW) and Dr. Ana Dosen (Paediatric Allergist and Immunologist at St George Hospital). I lived in hospital for a long time. I stopped going to school; I really missed my friends, and even missed studying. Weird.
In 2014 Professor Murrell and The Avène Hydrotherapy Center helped me and my mum go to France to do a treatment with the magic water, it was really good and it helped me a lot, they told me to come back every year for 3 years, but my parents couldn’t afford it, so I didn’t go back in 2015 and I got really sick again; I had to take dangerous medications, send my blood to Israel, and even get a big company to sponsor me so I can get a special injection that cost $25,000 (17, 900 USD) per year.
In 2016, the doctors told my parents that they did everything they could, and I knew I had to go back Avène, in France. My parents fundraised heavily for me at the time, and thanks to some very generous people, I was able to go. The doctors there helped stabilise my skin and they taught me how to manage my condition. For the first time in a long time, I was comfortable and happy, AND I went to Disneyland!
I hope that I can grow out of this condition, or that one day they develop a medication to treat it forever. I know it’s something I cannot control myself. In Australia, the weather is sometimes very unstable that my condition gets bad very quickly. On a normal day, I have to rub creams all over my body twice a day; but some days when it’s severe I have to take salt and bleach baths and use full body wet wraps. The saddest part about this is that I can’t eat mangoes; I LOVE mangoes!
My parents always tell me that I’m a strong girl, but all I want to do is get better, be a normal kid and do the things that all kids my age do. Sometimes when I saw myself in the mirror, I worried what my friends will think about me, if they will still play with me, or if people will stare at me on the street, but I am lucky everyone I know is very supportive, and counselling always helped.
Until recently, Nayeli was taking Methotrexate, Singulair, antibiotics, various atopic creams and a shot of Xolair once a month. Since the last treatment in Avène, she only uses the creams, which cost about $1,300 a year.
By Michel Wahba