Sandrine suffers from atopic eczema, an incurable chronic disease that ruins her days and nights. She hid her skin for a long time, out of shame.
THE June 3, 2023 is dedicated to national eczema day. Some time ago, we had met Sandrine who had suffered from eczema since childhood. Disease, moderate at first its extended to the whole body when it became an adult. His atopic dermatitis was accentuated byhives and allergies to almost everything.
Le Journal des Femmes: What are the visible signs of your eczema?
Sandra: I have red patches on my face, neck, behind my ears, on my hands, arms, all over my body, down to my feet. Hands are sometimes very red and cracked. The itching is so bad that my red patches are sometimes scraped off with blood.
Le Journal des Femmes: How do you see yourself and how do people see you?
Sandra: I lost confidence in myself very young, I withdrew into myself. Around me people say “oh my poor” at the sight of my red plates and I don’t like it, it diminishes me, I can’t feel like the others. Once, my ophthalmologist did not shake my hand to greet me as usual when entering his medical office.
“Once my eye doctor didn’t shake my hand”
I held out my hand, seeing it he must have thought I had a contagious disease or something else, it marks. And then there are those around you who don’t understand. I was constantly told “stop stressing” because stress is known as an aggravating factor. I would come to wonder if I was not really stressed, which ended up leading me to a treatment with antidepressants for yearswithout improvement. My husband almost finds it difficult even today to understand that I can’t swim in a pool or dress in anything other than pure cotton. He doesn’t always understand that I need a lot of care products, spread with creams without perfumes or preservatives twice a day, he sometimes says to me “you’re a little abusing, aren’t you?“. But I dread my gaze in the mirror every morning and find out what plaque will have appeared, even under treatment, there is no respite.
“You stop 10 days for eczema?!”
Le Journal des Femmes: What is the impact of your eczema on your daily, personal and professional life?
Sandra: With my red patches on visible parts like face, neck, hands I almost lost my job as a nurse’s aide at the hospital. I was aware of it when I chose to do this job, so I didn’t talk about this “stuff” to anyone, nor to occupational medicine, they wouldn’t have trained me, they would have incapacitated. Especially since I thought when I was younger that it was going to pass. Afterwards I hid everything that could be seen so as not to lose my job. My hands were cracked red, and my job requires very frequent hand washing, so I said to myself “if I want to keep my job, I have to lieand that I do like the others”. I washed my hands with the same cleansing products as my colleagues so as not to appear different and arouse their suspicion. I remained discreet about the pain, I never complained, I put a lot of cortisone to palliate. I don’t want to appear sicker than the patient! I ended up telling my manager and my colleagues about my illness two years ago when I was arrested for 10 days for my eczema. I remember my manager’s reaction on the phone: “You stop for 10 days for eczema?!” Yes, and in the end I had to be stopped for a month and a half because of intense flare-ups. There is more understanding today than a few years ago. Today, I take my soap and my emollient creams to work and I dare say that I have “this”. In terms of personal life and day-to-day life, my husband still has some misunderstandings, in the evening when my skin burns and I do not feel like going out… I am also sensitive to everything, dust mites, strong odors, I pay attention to everything, the choice of my creams, rinsing my laundry twice and the slightest redness, I self-medicate. You can’t be like the others in times of crisis, but he helps me to be positive and now that my children are older, that I have a treatment that works, I devote my free time to the Association Française de l eczema of which I became a member. You have to be able to be positive and talk about it. Today I’m happy, I want to live but it happened to me to think that I could no longer live like that.
On a scale of 1 to 10, I was 10 in pain, I couldn’t shower anymore, this pain is driving me crazy.
Le Journal des Femmes: What treatments have you undertaken?
Sandra: I tried everything: corticosteroids, spa treatments, UV therapy, antidepressants… We believe so deep down that it will work, that the atopic dermatitis will stop, but no. UV therapy worked for a while. After 9 to 10 sessions of “sun in a box” I was relieved for a period of about a year. I lasted a few years like that before other problems arrived because I had “taken the sun too much”, I had a carcinoma on my forehead. There has been no new effective treatment, my dermatologist didn’t know what to do for me, she said to me: “We’ll have to wait”. I was expecting a miracle then. When she retired, I went to consult elsewhere, in the office and at the hospital. And that’s when I was offered a new treatment: dupilumab injections. I started on October 1, 2018, I was dreading the side effects, but I was in so much pain I took it. On a scale of 1 to 10, I was 10 in pain. with an impact on my sleep, I could no longer shower, the pain, the itching, the burns are driving me crazy! So I trusted the Professor at Cochin Hospital in Paris who prescribed these injections. At first I had like the flu: nausea, headaches, fatigue. After 3 to 4 days, the expected effects were real: the pain was decreasing, the plaques on my skin were turning pink and they disappeared as the days and weeks passed. Now I have no more pain when I shower, less pain, I have hands like everyone else and nothing or almost nothing visible. For a year and a half I have been receiving an injection every 4 weeks, but depending on the reactions it is possible to accentuate the treatment. The undesirable effects diminish over time, only the dry and red eyes persist, but we are ready to suffer a little to stop having this eczema and this suffering. I have hope in research to overcome eczema, I almost hope for a second life to live.
*The first name has been changed for the testimony since our interlocutor wished to remain anonymous.