Meet Samah – Jordan

My name is Samah, I am 29 years old. I am calm, cheerful and have a great sense of humor. My heart is full of love, especially for children, horses, cats, gazelles, oryx, and falcons. I love writing and imagining stories. I also enjoy reading poetry and novels. I love the quiet of the night and sitting by the seashore. I have a skin condition called ichthyosis. I want to share my story about this genetic skin condition.

My journey with it began at birth. I was born at Rijal Alma Hospital in the Kingdom of Saudi Arabia. My doctor at the time was Dr. Abdul Karim. I was born with my eyes completely closed and covered by a layer of skin. I was placed in the neonatal intensive care unit for two months under observation. My sister and I were classified as a rare case.

The condition stayed with me as I grew older. At school, I faced bullying, but there were some girls who were good friends to me, stood by me, supported me, and helped me. In some public places, I noticed people looking at me with mockery and scorn. Children my age didn’t play with me or accept me. But I learned to rely on myself and became my own role model. I participated in many school activities and joined a Quran memorization center. Alhamdulillah, I completed the memorization of the entire Quran.

I finished high school with an excellent grade of 98.5%. After that, I moved to Jordan to continue my studies. I enrolled in university and studied Biology, focusing on Genetics. I graduated, but I couldn’t receive my certificate due to financial circumstances.

I went through very difficult days, especially with weather changes. In winter, my skin becomes tight, cracks, bleeds, and develops painful wounds. In summer, I often faint because my body temperature rises sharply, reaching up to 42.9°C. There were many situations, but with each one I learned a new lesson. With the treatments, creams, and moisturizers I use, my condition has improved a lot compared to before.

As for my younger sister, she went through the same experience. She is now 19 years old. I was her role model, and I always encouraged her not to care about hurtful words. I supported her and advised her on how to take care of herself. She is now in her final year of school, and insha’Allah she will go to university to study the field she loves.

I must not forget to thank my family (my mother, father, and siblings) for their efforts to ease our pain and for their care and concern for me and my sister.

This is my story with ichthyosis, and my famous line that I repeat every day and will never forget:

“I was born with a condition that will be with me all my life, but with every pain, there is hope.”

All praise and thanks are always to Allah for everything.

The bigger story I await is when I participate in scientific research or conferences where I can raise awareness about this disease, or in any event held under its name. Because I have a dream I want to achieve reaching a cure for this disease. For Allah did not create a disease without creating a cure for it.