Jean-Michel is 55 years old and suffers from dry ichthyosis. He has worked in the press for several years, and shares today his experience and thoughts.
Can you summarise your story with ichthyosis?
I was diagnosed with ichthyosis when I was born. My skin was peeling on my whole body. I also had turned lower eyelids.
Today, I still have a skin that peels. I need to put cream on every day. I also take a medicine: Psoriatane, which is a retinoid. I am also monitored by a dermatologist every 6 months or every year to make blood tests, to check if everything is all right.
Each person reacts differently to creams, you need to find the one that suits you best. Personally, I use pure Vaseline on my body and the Hydrating Gel Plus HS on my hands. In the shower or when I take a bath, I use a gel with milk and honey which I buy over-the-counter, or a soap with honey and propolis.
Before, I was using other creams on my hands, and I needed to use them several times every day. Today, using the Hydrating Gel Plus HS only 2-3 times a day is enough. It is much more moisturising than the other gels that I used. I feel that my hands are much softer than before.
What consequences did ichthyosis have on your personal or professional life?
With an illness like this one, you are rejected by people when you are looking for a job. They are afraid to touch you when they don’t know what it is. I was rejected several times. It was made clear to me that people did not want to work with me. I worked temporary jobs, I did some handling, a lot of small jobs. Finally, I worked in a printing house up to 2012, and there I was totally accepted.
At school, I had no friends because the others were afraid to touch me because my skin was peeling so much. And today, thanks to the Psoriatane, it isn’t the case anymore. In addition to that, I had turned eyelids: when people see something like that, they are afraid. No one wanted to work with me, as they were afraid to catch it. Even when I explain, people are afraid.
When I do some shopping, people make sure not to touch me when they give me the change. Some days, I let it go, but other days I get mad. It isn’t always easy, but you have to get over it. What really helped me was the French Ichthyosis Association. I was all alone when I was a child, but now it does me good to have met other people suffering from ichthyosis.
In 1990-1991, I have had eye surgery, for my turned eyelids. Since then, I feel that I am a new man. People look at me differently, I feel like I have a new life.
What is the most painful experience that you lived linked to ichthyosis?
Without hesitation, my childhood: when you are born with ichthyosis, you think that you are alone in the world. I said to myself: “Why did my parents make me like this? Why me and not someone else?”. It is really difficult being rejected by everyone. I created a bubble for myself, where I was separated from the others. I was always rejected.
All my life has been very difficult.
But I fought to get a job, I proved that I was capable of working in a printing house like everyone else, even without any diploma. I built my career.
Right now, I am satisfied. I have ended my career, I am happy. I have come to terms with it, I will never be cured, unless there is a miracle. I just hope that the doctors will find a cure for future generations because I know that medicine makes a lot of progress.
What is the most pleasant story that you have lived linked to ichthyosis?
I had a friend who had a fruit and vegetable store. One day, he saw an article about an association: the former French Ichthyosis Association. He called me, asking if it was the illness that I was suffering from, and he gave me the phone number. That is how I met my partner. We became friends, saw each other a couple of times, and fell in love.
What advice linked to ichthyosis would you give to someone suffering from the same illness?
Water cures can be helpful for some persons. It depends on the skin’s quality. You need to try different products, as not everyone reacts the same to them.
You also should avoid smoking or drinking.
What advice would you give to persons suffering from ichthyosis to find information or useful solutions?
I would advise looking at the website of their country’s ichthyosis association, like the French Ichthyosis Association, where there is a forum with all the necessary information. People can also leave testimonials.
What has ichthyosis changed in your life?
Without ichthyosis, I would have lived differently, I would probably have had another job, and I maybe would have had children. We chose not to have any with my partner, because as she suffers from ichthyosis too if we had had children, he or she would have been certain to have it too.
But there are people worst off than me: I am lucky to be able to work, to be able to walk. There are more serious illnesses. You need to fight. Even if it is tough, you need to move forward, even if it isn’t easy every day.
If you had to send a message to persons suffering from ichthyosis like you, what would it be?
You need to fight, to show that you are like everyone else. You need to try to explain to people that they can’t catch ichthyosis, that it is an orphan disease. It is an illness like many others, and the doctors are powerless. But you won’t die from it.
If you had to send a message to those who don’t know about ichthyosis, what would it be?
You can touch us without being afraid to catch it.
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