Updated May 2023

Ichthyosis Awareness Month: Some thoughts

Recently I read an article that I wrote on the blog of Ichthyosis Support Group ten years ago. It was the time when I was thinking a lot about my life after graduation. Intriguingly, even though my English writing skills are much better now, the feelings were almost the same then. Reading what I wrote feels like checking the to-do list while looking back to see what I have achieved and what not after a decade. On one hand I am quite happy with how far I have been through: I am living in France where the climatic condition is much less harsh to me in summer than what we have back home. Vietnam is always my favourite country, yet I wish to be able to visit my family once a year in the winter time. I will avoid the heat with all my might.

The period of May - June is always the most difficult time of the year to me even though these are not the hottest months. It is hard to explain in words. In my entire life I have been trying to find the mechanisms behind every one of my own emotions. The theory is that when I get used to the comfort that cold winter brings to me, I become fully myself and almost forget about the skin condition that I am carrying. Then summer comes as a wakeup call! As usual I have to learn again how to deal with it. The funny thing is that I must say I am quite experienced in that (after more than 30 years of living with Ichthyosis I allow myself to say so), but still feel like a novice every year. It takes me several weeks to get familiar again with another me of the year. Year by year, this is still an interesting yet unpleasing experience.

Right now I am still struggling with the general questions in life as anyone else but if I could say something to the version of myself ten years ago, I would say that it is not essential to try to be normal nor to expect others to look at you as how they look at other people. It is more important to know that you are different and embrace your own difference as it takes part in making who you are. There are more valuable things in life to focus on than trying to fit in.

In the end I must thank Ichthyosis for teaching me how to listen with a wide open heart to others' feelings before having an intention of assuming. Moreover, the older I get the more I feel grateful for what my parents have been doing to me. They have been trying to help me fly even though they do not have wings themselves.

Read more about Mai in her blog www.mai-duongtt.com

My name is Mai, I’m a 20-year-old student with many dreams and ambitions. As other sufferers of ichthyosis, I had been going through both physically and mentally difficulties. However, it’s a must to learn how to face our problems. Then I have gradually accustomed to solve them on my own step by step. Have you ever felt tired of exerting in such a long time? Sometimes I want to give up all of those things which I have carried on. The only motivation that makes me always move on is that because somehow there will be a result if I will to do something. Seriously, when I take a look on my future after graduation, I really feel nervous. There are a few troubles that seem to be nothing with people but these turn out annoying when it keeps persisting you.

I’m not sure what kind of ichthyosis that I have to suffer, but it definitely drives my life harder. The hotter the weather is, the worse my skin gets. Unfortunately, it’s hardly cold here in my country. I have never gone to a party just because I could not wear a beautiful dress nor makeup neither. Although photography is one of my hobbies, I am seldom taken a photo. Even though I always dream about travelling around the world, I do not go out frequently. There is no chance for me to join any social activity though deep inside my heart, I truly want to volunteer for an organisation or to do something to help people, especially children. Because of my look, it’s not easy to find a part-time job. I was a tutor but it got bored me quickly, the reason was I prefer communicating with everybody. I try to adapt but deep down I do not want to live this way. After rejecting the Medical School’s offer, I got in Hanoi University of Pharmacy with the hope finding a cure for symptoms of ichthyosis. It’s no deny that I was too pessimistic. Believe me, you would had looked life in the same way if you had had siblings who are all beautiful and successful. In addition, my brother keeps telling me that he would provide for me because he thought that I had no future at all. That’s the reason why I’m trying my best to prove that I have ability to take care of myself. There is no doubt that it is not easy, definitely not.

In order to help myself be better able to deal with challenges, I don’t forget appreciating the smallest joys in life: I have taught myself to cook, I have been learning photography. I am saving money to travel and going to afford a new professional camera then I can perform my creating through photos. I’m receive into a pharmacognostical laboratory in university. Hopefully, I will find out a connection between cosmetics and plants. Whenever a new idea appears, I note it immediately so perhaps it may be useful someday. I have a dream. I want to go abroad and continue researching on my field.

I think, more or less, we all here have to undergo similar situations then it’s no need to tell anymore about it. We probably understand, don’t we? No matter what happen with me, I always ready to face it. Everyone deserves a happy ending so I allow myself a few minutes to imagine how my ideas become true any time I feel exhausted. I realise that never be content with fate, accept it