Ichthyosis, easy to recognise, hard to specify

Diagnosis

Although my skin appears to be strikingly keratinous so that people even doubt if I have only Ichthyosis but also other comorbidities, the “fish-scale-look” is one of the most indicative features that is easy to recognise (it sounds kind of unreasonable but my dislike of fish had been instinctive during my childhood). However, it took me decades to tell which type of Ichthyosis I have been carrying.

The first time I heard an official diagnosis it was in 1998, in the biggest paediatric hospital in Ho Chi Minh City (also known as Saigon). The doctor told my mother that I was carrying a genetic skin disease called “dry fish scale”. Can you imagine the feeling of my mother (I would probably feel the same)? A relief! Yes, it was a great relief to her that the disease I am carrying is a genetic condition. Why? Because it was not due to malnutrition nor her carelessness while raising me that I had to suffer such pain. I was six. I was also happy for the same reason. In our society back then, mothers usually had to take the main responsibility for the wellness of their children. I still remember that Dr. Thuy was the physician who was in charge of my case. Her empathy and kindness totally took me by the heart. I attended that after ten days of being hospitalised I would come out of the hospital as normal as every other child in the neighbourhood. I was very excited.

Ten years later, my mother managed to convince me that the technology had developed enough so that I could come to the hospital once more. It was my first year in high school. Dr. Dien was trying to make me take the pills that cost 45 thousands VND each once a day. My dad’s salary was 6 million. My sister and brother were still in need of their universities. I was fine with some ointments containing corticosteroids and salicylic acid that were totally reimbursed by the health insurance. But then not long after I got rid of those ointments because some of my classmates were complaining about my sticky hands and the ointment odour on my body.  Needless to say, high school was rough. I had the thirst of going to live in some European countries where I believed that the winter is cold. Studying was the only solution I had in hand. I was a total nerd in high school. A hard-working nerd.

I got admitted into Hanoi University of Pharmacy, the most well-known pharmacy school in the capital. I was eager to know about my skin and was naively confident that I would find some remedies to cure the disease myself later on. Do we call that the beginner’s enthusiasm? I think you can call it that way.

The more I read dermatology books the more I felt confused. First of all, there was nothing like my skin that was described in those books. After hours and hours in the libraries, all I could learn was psoriasis. Either because I did not understand what was written in those books very well or my “fish-scale” conditions were not well recorded in literature at that moment.

In the years of 2010-2011, I started to use computers and the internet for the first time. Since that moment I had known that my skin condition was called Ichthyosis. Other questions were coming up next: which type of Ichthyosis exactly did I have? Why did I have it? What could be the factors that aggravate the skin and what could make it better? Would anyone of the next generations in my family have to come down with it like I did? And thousands of thousands of other questions that I wanted to answer.

Aetiology

I am the only one who incurred Ichthyosis in my family. My parents are in good shape. My sister and brother have the healthiest skin you can imagine. Our life was too difficult so we did not allow ourselves to be fragile.

People kept asking my parents what could be the causes of my skin. Some said that I might get affected by the agent orange dioxin that was residue after the war. Some said that I must have inherited it from some members of the previous generations in my family. Some people even insisted on superstitious reasons. I was annoyed.

There was a story that my parents did not want to diffuse at all. The elder brother of my paternal grandmother had “snake skin” on his feet. People in the village called him  a “mouldy man” at the time. All my cousins who are his grandchildren have flaky skin. However it was not the same level of severity compared to mine. But we did believe that my Ichthyosis was something of inheritance.

Common comorbidities

If it was only about appearance, I was taught to not care that much. Unfortunately, what bothered me a lot was the consequences that my hyper-dehydrated skin had been causing. In spite of being an active child, activities on a hot day could lead me to troubles. I could have severe headache, nausea, or even heart palpitations.

The hot and dry weather in the south of Vietnam was a real nightmare to me. My fingers cracked so that I could not hold anything too tight, I could not clap my hand or even write without having my hand bleeding. My feet 'skin was too thick and did not retain its own elasticity to the point that I could not walk properly. It was too painful on every step. At some point I had to creep and crawl on the floor while nobody paid attention. I did not have a lot of hair. I was selective on the fabric that my mother chose for my clothes because some synthetic types irritated my skin. I could not close my eyes entirely. I got infections non-stop with purulence on the head and in the ears. My mother told me that the worst thing that happened was when I was an infant. I passed out once every day, then every two days, then once a week, etc. It seems like my body learnt to adapt with my cutaneous deficiency gradually. Even my parents found it hard to believe that I could survive. But I did. I have been getting better.