The story of Zainab
I am Zainab, I was born with a rare skin condition called “Ichthyosis”. But my life wasn’t only about Ichthyosis. I didn’t know that I’ve a rare disease till high school! I knew and felt I was different than my school mates. I suffered from bullying in middle school, I was alone and afraid to talk to people. My skin is very dry and sensitive and doesn’t sweat properly because of the scaly skin, I still remember when we have a sport session at school my skin turns red and hot leading to heavy palpitation, and the teacher doesn’t know how to deal with me.
Even my parents, they lack of knowledge of this rare disorder, but can’t deny their hard effort.
My life is all about creams and I tried many moisturizing products. Until university days, and because of Rare Disease Day in my country “Bahrain” on 2018, I met girls like me! I felt so happy “I am no longer alone!” we are in contact since that day and we exchange our experiences, which has been very useful! My skin is a lot better than before because I tried their successful skincare routine.
I’m now 26 years old, feeling different, my Ichthyosis has taught me patience and strength, I become more social and not afraid of my rare condition anymore. Since childhood, I’ve been into art, I like to draw, and actually I express my inner feelings through art, which inspire art lovers and artist’s and that my aim, is to inspire and draw a smile on people faces.
I didn’t know that there were many types of Ichthyoses, mine is “Ichthyosis Vulgaris”. Moreover, I didn’t born with Ichthyosis only, also with a genetic blood disorder called “Sickle cell disease”, that make my life even more painful and challenging!
Since my skin needs daily care, so when I get a pain crisis from “SCD” I don’t get a chance to moisturize my skin, then it becomes very dry, cracked skin and could bleed from dryness.
Sickle cell disease is very common disease in my country, many times when I visit the ER the doctors give me that strange look “what’s wrong with your skin?” so I explain to them, but sometimes they don’t listen or understand me I don’t know (of course not all doctors). I can’t forget that one doctor thought my skin is burned!
Indeed, thanks to my parents, especially my mom and close friends, supporting me all the time. I see Ichthyosis as a “gift from God” all the experiences I had in my life has shaped my personality to be strong and optimistic. It made me realize the uniqueness of myself. On top of that, I like to inspire people to make them feel much stronger and never give up hope.
I’ve created a YouTube channel to share my art and other inspiring videos called (ZeyCreations)
Thank you RDD!