06/03/2026
"My name is Tetiana, and I am from Khmelnytskyi, Ukraine. I was officially diagnosed with Darier’s disease at 42 years old, but my symptoms began when I was just six.
As a child, I had red, dry patches on my face and hands. During my teenage years, I developed scaling around my eyes. Treatments helped temporarily, and for several years in my early adulthood, my symptoms disappeared. I thought it was behind me.
After the birth of my son, the eruptions returned — more severe and persistent. Doctors told me it was allergies or atopic dermatitis, but treatments did not work. Over the next 20 years, my condition gradually worsened while I searched for answers.
One of the hardest parts was not understanding what was happening to my body. Sweat irritated my skin. I had to give up sports. Certain clothing, sun exposure, and even salt water caused painful flare-ups. Family vacations often meant long recovery periods afterward.
When my daughter was born with sensitive skin, I felt afraid. I still didn’t have a diagnosis, and I worried I wouldn’t know how to help her if she followed the same path. That fear pushed me to keep looking for answers.
Finally, a dermatologist suggested a biopsy. One year ago, I received my diagnosis. I felt both relieved and frustrated that it had taken so long. I had already learned to manage so much on my own.
Although treatment has brought some hope, I still experience relapses, which can be emotionally discouraging. I am now seeking genetic consultation for my daughter so I can be prepared and informed.
Living with Darier’s disease has taught me to listen carefully to my body. My message to others is this: advocate for yourself, seek support, and don’t give up searching for answers. Understanding and compassion make this journey easier."
