Mousa A. - Jordan - 2021
My story with lamellar ichthyosis
By Mousa Abudosh
My name is Mousa Abudosh (30 years old) and I would like to share my story with lamellar ichthyosis. I have had this from birth and constantly have dry, thickened, scaly and flaky skin that often cracks and gets infected. Having suffered with this from birth, I had tried many treatments to help me, but in my country I was not able to find any treatment or solution.
I was born in Jordan and I completed high school and university there. I have a degree in computer science. When I was child in primary school the teacher sat me in a seat alone and I felt ignored and uncared for. No one was talking to me and I didn’t have friends. This has affected my psychological state and has caused me to always feel ashamed of my appearance. Even in university there was persecution because I have a skin disease. I found it difficult to share a room with anyone as others were uncomfortable around me. After university, when I started to apply for jobs, I sent my resume to many companies and would always pass the online exam but they rejected me when I had an in-person interview. I could tell that employers were nervous around me and would avoid looking at me, ultimately leading to me not being hired.
My father is Jordanian and my mother is Chilean, so as a Chilean citizen, I decided to travel to Chile, hoping I would find a good life and treatment there. I worked as a front-end developer in a Chilean company, but they paid me a low salary and not enough to cover my life and treatment expenses. I faced many difficulties in the life there. I changed where I lived more than five times and my disease made others feel uncomfortable around me. Finally I came back to Jordan without any results.
For years I have felt rejected and unwanted, both socially and now in the workforce. I have continued to feel that doors are constantly closed for me because of my skin disease. So many people worry that I am contagious and avoid sitting near me or being with me.
In researching my skin condition on the internet I found a website of The Foundation for Ichthyosis & Related Skin Types, and I joined the private Facebook group. I asked many members if there was any support for people like me, and they said yes. They informed me that there is a treatment and that people suffering with ichthyosis in the USA can go on to live a good life and be productive members of society.
Finally, I would like to say that my dream is the same as anyone in the world, I dream to have good work, to be married , to have children ,and to live as a normal person.
If you’d like to connect with me professionally, here is my LinkedIn profile for my work as a developer: www.linkedin.com/in/mousa-said-aa0155113