Jonalyn S. - Phillipines - 2019
Pick a point in your life and write about your challenges or successes.
Motherhood has brought me to different journeys and I had my first child at the age of 19. I was very young and was afraid to raise a child. My life changed when my eldest came. 10 years later on the 4th of September, I gave birth to another and called her Thala (big bright star). She looked perfect except her skin which we noticed was too white as if she was soaked in a water for a long time. Days passed by until I noticed some part of her body seemed and her palms and soles were covered with a dry yellow flakes of cracked skin. Two months later, she developed blisters and when we brought her to the dermatologist, she told me Thala had ichthyosis vulgaris. She said I'm lucky cause it's the most common and mild type out of 27. As months passed by, her skin got worse until I brought her to another dermatologist and found out that she had bullous ichtyosiform erythroderma. At first I wanted to cry asking myself why out of millions of babies around the world, why my daughter? I did everything I could to make her healthy. It hurts me a lot whenever people approach and ask me about my daughter's skin. They thought she got burned. There were days when a tear would drop from my eye whenever I thought about the future. What if she gets bullied? What if her friends mock and try to walk away from her? Will I ever see her wear something confidently and proud? Can she handle the situation? Can she accept herself? In the Phillipines, ichthyosis is something most of us never heard of. Going to the derm is not an easy thing here and the products they recommend are expensive.
How has FIRST impacted your life?
One day I found FIRST and later the Facebook groups associated with it. I got to meet some people who deal with the same medical issues. They sent my daughter help emotionally and financially. I learned a lot from their never ending support and advice. Today I learned to understand that this condition is no one's fault and that my child is not just one of the unfortunate randomly chosen kids. I fully accepted my fate as a mom and will do everything to raise both of my children happily and peacefully together with the help of my loving family.
FIRST is the only Foundation who helped my daughter right away. It made a very big impact in my life. It also lead me to connect to people who eventually extended their helping hands towards my daughter. For me, every person working at FIRST are God given people. My family deeply thanks this foundation.
This information is provided as a service to patients and parents of patients who have ichthyosis. It is not intended to supplement appropriate medical care, but instead to complement that care with guidance in practical issues facing patients and parents. Neither FIRST, its Board of Directors, Medical & Scientific Advisory Board, Board of Medical Editors, nor Foundation staff and officials endorse any treatments or products reported here. All issues pertaining to the care of patients with ichthyosis should be discussed with a dermatologist experienced in the treatment of their skin disorder.