The story of Kamran
I am Kamran from Azerbaijan and I am 25 years old. Since birth I have suffered from Dystrophic bullosa epidermolysis. I could have not imagined the life I would face while growing up. For this condition being very rare in my country, my parents had no idea what they are dealing, neither. Everyone around knew nothing about the difficulties and suffering we were about to encounter.
My skin lacks a gene that bonds skin layers together, so it makes it very easy for the upper one to come off at slightest damage to it. Blisters develop on my skin and then become wounds that sometimes can take up long time to heal if taken care properly. It is also the same for the tissue inside of my mouth, so my tongue healed stuck to the bottom jaw. My wounds hurt all the time, even while sleeping. No one had hope that I can speak, however, I managed not only speak in general, but I also know several languages (like my mother tongue, Russian and Turkish). I was homeschooled and got the best marks. The best thing about school was that my teachers were treating as a healthy boy and demanding the same as those at school. Everyone was amazed at how I can write with all my fingers (except for my thumb) joint together as a result of bad healing process. I finished the school with very good grades and proved that with support, love and stamina everything is possible. I love playing chess and tried myself at some local tournaments, however, it has become more and more difficult to move around, so the last few years I have been mostly bed-driven. I wish one day I can get back to pursuing my dreams. I wish to be able to hug people without being hurt, to run and jump, eat without grinding everything into porrage first, sleep without feeling the pain, play football and go to university. I am very interested in computers.
I want to show people that despite being hard it is not impossible to dream. Thank you very much for the opportunity to let me share with you my story.
(The text was written in Russian by Kamran and translated into English by Guney Akbarli, his sister).
#RareDiseaseDay2022