Xavier is a entrepreneur of 54 years old, and suffers from hand psoriasis. He tells us in this interview about his painful experience with this skin condition, and how he managed to overcome it.
Can you introduce yourself in a few words?
My name is Xavier Desport, I am 54 years old. A little over 4 years ago, after having worked for more than thirty years in big groups and in parallel to my professional activities, I created a company dedicated to favour the return of seniors on the labour market, especially in start-ups and SME.
What skin condition are you affected by?
Can you summarize your story with psoriasis?
Around the time when I started my company, I started suffering from psoriasis on my hands. It started a few years ago by damaged finger tips, especially in the winter. Within two winters, my fingertips went from a stage where they were painful, to one where my skin started to crack completely. I started having absolutely terrible pains because my skin was cracking and it took weeks to heal. It spread to my hands, in particular to my left hand. The fingertips of both hands and the palm of my left hand were extremely affected, to the point where I couldn’t open a bottle of water. I was sometimes stuck because I couldn’t use my hands: writing, typing on a computer was painful. Within one or two years, I dived in unbearable pain which ruined my daily life.
At the beginning, I was told that it was stress. When it happened, I had the opportunity to go on vacation for a week for the holiday season, and when I came back the psoriasis was gone. So I said to myself that I just needed to calm down a little, and that everything would be fine. But after a few weeks, it was back.
The following spring-summer there was a small relief, but the next winter, 3 years ago, it really became hell. It spread, extended, and strictly became a handicap. There are more serious handicaps than mine, but the pain was terrible… To give you an idea of what I felt: when you cut your finger with a very sharp knife, you feel a white pain… well I felt that permanently, on my fingertips, from morning to night. It was agonizing, to cry for. I took my satchel to work, and my hands hurt. Attaching my buttons was unbearable. Everything had become impossible.
The doctors gave me a background treatment with some Toctino which has an incidence on the cholesterol level. So I could only take it for a short time. The first year, it helped me, but I wasn’t able to take it again after that. Then, I was completely at the mercy of market creams which had no effect.
What consequences did the psoriasis have on your professional life?
I have a commercial activity, which requires contact. Hands are important in commerce. Professionally, I have always tried to hide my situation, and I think that overall, only a few persons in my professional circle noticed what I had. I didn’t want to show it. You never know what the reaction of your relatives is going to be. The few times when people noticed, I saw their faces go from horror to fear. And when I explained to them, even though I tried to keep things simple, I saw disgusted faces in front of me. I can’t blame them, but when you see persons who are close to you, whom you know, have a reaction of disgust, it hurts. You say to yourself that you were right to think that they wouldn’t understand. This is part of the things that you don’t show.
Otherwise, I haven’t told everyone about the pain I was in. Some may have noticed that I seemed a bit preoccupied, and I think that the pain changed my behaviour too. It took precedence over my way of life. This pain became a dark curtain over time.
What is the most painful story linked to your story with psoriasis?
The peak was on July 14, almost 4 years ago. July 14 is a national holiday in France, the weather is nice, everything is good, it is a public holiday… and for me, the pain was growing. I woke up in the morning, and said to my wife: “I can’t take it anymore, I need to cut a finger off. I can’t take it anymore”. The pain was indescribable. She told me to go to the emergency room, and I met a wonderful woman doctor. But having to go through Paris, to find myself waiting in a huge hospital, this added to my ill-being… I always have had the feeling that just walking in a hospital makes you sick. The worst was having the doctor tell me what I was suffering from (which I already knew) and tell me that they were going to run some tests. It was only in September that I started the Toctino treatment protocol. It is hard to think that on certain aspects, medecine is still in phases of test and evaluation. It just tries to conceal the pain. The treatments have consequences that need to be closely monitored.
And what is the most pleasant story linked to psoriasis?
The most pleasant thing that the illness brought me was to rediscover the joy and the use of my hands once I was cured. We don’t realize what it means to be in good health, for your hands or other things. And what a tremendous pleasure it is to regain the use of your hands. One of the first things that I was able to do when my hands got better was to do some gardening. It is stupid and simple, but I couldn’t do it anymore. The first time I was able to garden again, I hurt myself because I was so happy to regain a normal use of my hands that I forgot that I still had cracks. Today, when I garden, I protect my hands with gloves. But the first times that I started gardening again, I did it with my bare hands, because I was so happy to do it. The pleasure of the contact of the hand, the sense of touch, it was incredible! Now, I have regained the use of my hands to tinker and garden, and it is absolutely amazing.
What advice or tips linked to psoriasis would you give to someone suffering from the same skin condition?
I have tried all the creams on the market, not one worked. Psoriasis being caused by stress, all the medical work can only be a support work. The only thing to do is to manage your stress. As the pain generates stress, it is a cycle. I came to use old tricks, wearing vynil gloves to cook, to protect my hands. I was constantly trying to protect my hands. I had a dermatologist tell me that I needed to put glue in the cracks of my hands to fix them. It is crazy, but that is what filled my cracks, and contained the pain during the most difficult moments.
But there is no real recipe. The drama is that everyone is very bothered for you, and I believe them to be sincere, but there is unfortunately nothing you can do. The only thing that worked, in a few weeks time, was the Skintifique Hydrating Gel which I have been using since November 2013, and which thanks to its combination truly and deeply softened my skin. Before, my skin was cracking. Imagine the earth during summer cracking under the sun: my skin was constantly like that. No hydrating cream could moisturise sufficiently the layers of my epidermis. The Skintifique Hydrating Gel is the only skincare that penetrated my epidermis deeply and durably enough (it took 3 to 6 months, at the rate of 7 to 8 applications a day) to eradicate the psoriasis.
It started to have an effect little by little; the pain decreased quite quickly, the cracks stopped expanding and ended up healing, the fingertips and phalanxes started to resume a normal aspect, and today, apart from a part of the palm of my hand where a little callus remains, my hands have regained a totally normal use. But I continue to put the gel to maintain the hydration of the skin, to avoid cracks. If by any chance I don’t put some one day, I realize at the end of the day that my skin is dry and that something is missing. I have a permanent need for hydration. From there to say that my stress has disappeared, I can assure you that it isn’t the case. The only element that changed is linked to this cream and its moisturising effect. The Toctino also had a significant effect, but you can only take this medicine on the short term.
What advice would you give to persons suffering from psoriasis, and looking for information and solutions?
When the illness started, I quickly went to see a dermatologist whom I trusted, and who has been treating me for years. She quickly explained to me what I was suffering from. My approach was medical: to go see a doctor I trusted. The doctor quickly told me that she couldn’t do much for me, she described the different stages of the illness, she told me that it could improve or get worse, but without really giving me information about why it would improve or worsen. With her advice, I tested all the creams on the market, without any success moreover. For me that was the problem, so I started looking it up on-line. But when you read the articles, you have a vision of horror in 5 minutes. So I stopped.
This week-end of July 14 where I went to the hospital, the doctor I saw confirmed what my dermatologist had told me about the difficulty of care, and the lack of solutions. It gave me a second opinion which confirmed that there wasn’t much except my despair, and to learn to live with the pain. There wasn’t any solution for me. So I was constantly hoping that the next day it would pass. It lasted a very long time.
What did psoriasis change in your life?
I didn’t lose hope. It just happened, and I always thought that it could just leave like that. People tell you that psoriasis is not contagious. So there was no risk of transmission with the people I met in society. But the question I kept asking myself was: “How did I get this?”
The reasons that were given to me, stress in particular, were completely valid. But I am not the only one with stress, and not everyone reacts to stress in the same way. Psoriasis is a form of expression of stress that I never had before. I tried to dominate it, I started working out, having activities, taking myself in charge, to try to have better hygiene habits. All this made me stronger. Not only do you live with pain, but in addition to that, you try to set up programs which are sometimes painful and difficult because you think they are for your own good. It’s a bit crazy!
I am not of a desperate nature. But the hardest is that even though you explain your pain to the people around you, the people closest to you, I have discovered that no one can understand what you are going through, and the degree of pain you are feeling. When I explain the sensation of the knife, everyone can imagine it, but no one can understand what it is to feel a knife stabbing you constantly. Even I don’t know how I managed to stand the pain that I felt for months, even years. I don’t know.
Given my situation today, I know that I was right. There was a solution, and I ended up finding it. My immediate entourage was invaluable during that time.
I remember moments with my children where I saw that they were happy, and I was happy for them, but I was in pain. There are a lot of situations where there are happy people around you, and you are suffering. It isolates you. I am not angry at them for not understanding, it isn’t their fault, and it isn’t mine either. You cannot blame yourself, or others. But it is difficult to communicate. You live with this pain. It is a different experience.
I always thought that despite all, there are more unfortunate people who are in much more pain than me. Yes, I had a handicap, pain, and it can come back. But I never thought that I was a hero.
If you had one message to send to those suffering from psoriasis, what would it be?
Believe in yourself, and hold on until you are cured. You will get there.
And what message would you send to those who don’t know anything about psoriasis?
Psoriasis is not a shameful illness, but it is a painful one. You need to try to understand this pain, and accompany it as much as possible.