To all who requested or interested to know my journey with ichthyosis

My name is Janan Mohamad. I’m a 26-year-old MD-PhD student in Tel Aviv University and Tel Aviv Sourasky Medical Center. I was born with a rare congenital disorder, known as congenital ichthyosiform erythroderma, which mainly affects the skin in the form of scales and erythema, but has affected every aspect of my life.

I would like to share with you my experience living with ichthyosis.

I was born to a warm, loving family. My parents always knew that I was different, that my skin was different, but they never treated me differently and in my early childhood, thanks to their support and to the acceptance of my close family, I lived a normal life, unaware of my disorder. To this day, I feel truly blessed for having grown up surrounded by such wonderful people.

During my first years in elementary school, when I was about six or seven years old, I started noticing that other children were staring at me, some of them keeping a distance and many of them not wanting to become my friends. I began to understand that I was somehow different.

As I got older and became a teenager, I began to realize the full extent of my disease and its social impact. I wanted to be popular, to be “cool”, but I couldn’t hide my condition. My face was constantly red from erythema and I had to deal with stares and teasing and repeating questions regarding my look or my disease. These years were very difficult for me and I had to be very strong in order to get through and deal with my condition. I owe it to my family, especially my parents, that I found the strength to keep going.

When I was 16 years old, after a long and difficult journey living with my disorder, I felt that I was strong enough to alter the reality of my life and decided to ignore the people who don’t accept me because I am different and to change the way I perceive myself. I said to myself: “This disease won’t defeat you, you will defeat it!” and from that moment I accepted myself for who I am and decided to discover the positive aspects of ichthyosis.

Unfortunately, social problems were not the only challenge as an ichthyosis patient and I had much more to deal with, most importantly, my health issues. The fact that there was no proper treatment for my disease was difficult to accept. I felt that this was yet another obstacle to overcome and so, after 3 years as a dental student in the dental medical school in Tel Aviv University, I decided to join a PhD program in order to investigate my disorder and enlarge the knowledge regarding ichthyosis with hopes of paving the way for novel therapeutic approaches.

Today I am in my final year of my PhD program and continue my research. I have been fortunate to benefit from the mentorship of two extraordinary researchers, Prof. Eli Sprecher, head of the division of dermatology at the Tel Aviv Medical Center, and Dr. Ofer Sarig, the head of the laboratory of molecular dermatology.  My study focuses on the genetic basis of ichthyosis and aims to delineate the cause of ichthyosis and the biological and genetic pathways, which are involved in the disease. Together with my teammates, I have successfully uncovered the genetic basis of many cases of ichthyosis and some molecular pathways involved in this disorder. Hoping that our data may help us to find proper medications in the future

I plan to continue my research… because this is now a pivotal part of my life.

Finally, as a patient, my advice to anyone who suffers from ichthyosis or any other and chronic and difficult disease, is to believe in yourself. To find the strength to cope with your disease and to change the course of your life. To understand that society can't choose your destiny – it is up to you. I believe that that the change must come from within ourselves and only when we accept ourselves for who we truly are, then we will be able to live a full and productive life.

Sincerely,

Janan

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This information is provided as a service to patients and parents of patients who have ichthyosis.  It is not intended to supplement appropriate medical care, but instead to complement that care with guidance in practical issues facing patients and parents.  Neither FIRST, its Board of Directors, Medical & Scientific Advisory Board, Board of Medical Editors, nor Foundation staff and officials endorse any treatments or products reported here.  All issues pertaining to the care of patients with ichthyosis should be discussed with a dermatologist experienced in the treatment of their skin disorder.