After two years of medical wandering, Claudia managed to find out in 2018 that she had Verneuil’s disease. She explains to us the professional and personal consequences of this disabling skin pathology which frightens some.
- While the first nodules appeared in her private parts in 2016, it was not until 2018 that Claudia received a diagnosis of Verneuil’s disease, which was made by a dermatologist.
- Due to the pain, the patient was absent regularly and eventually lost her job as a children’s entertainer. Subsequently, she was unable to find a job although her pathology was recognized by the Departmental Center for Disabled People.
- Since no one talks about this debilitating skin condition, which has social repercussions, it raises awareness among Internet users about the different aspects of the disease on social networks.
“Six years ago, nodules (i.e. rounded and protruding skin formations) appeared on my private parts, more precisely on the labia majora and minora. At first, I laughed about it. I said that I I had growing balls.”confides Claudia, aged 22 at the time and who celebrated her thirtieth birthday this year.
Nodules, abscesses… “I couldn’t walk anymore because I was in too much pain”
Although this symptom does not shock her, she decides to consult her GP. “My doctor told me not to worry because they were boils. So he prescribed me an ointment to treat this bacterial infection of a pilosebaceous follicle in the skin. “ Problem: the latter has no effect. “And the more time passed, the more my body changed and the more embarrassed I was. The nodules then appeared in hot and sweaty places on my body: the groin, the intergluteal fold, the anus, the armpits or my face again. In short, painful lumps grew all over my body. Sometimes I couldn’t go to work anymore, I couldn’t walk because I was in too much pain. Children’s entertainer, “I went from the person who always comes on time, even early, and who doesn’t count his hours to the person who constantly arrives late and who accumulates absences.”
Increasingly concerned about her condition, the young woman who lives between Paris and Montpellier makes an appointment with several health professionals. “I saw every specialist I could. Their talk was always the same. They thought it was boils or severe acne and that it would go away. Some said it was in my head and that I was stressed and anxious.” A few months later, she realized that she had an abscess in her navel and that the rod of her piercing was stuck in it. She is having surgery for the first time. At the end of the surgical procedure, this accumulation of pus is sent for biopsy to identify its health problem. “I never received the results,” deplores the patient. Shortly after, she underwent a second surgery. “This time, I was gone for six months. My employers weren’t happy!”
Verneuil disease: “I was finally able to put my symptoms into words”
In 2018, two years after the first symptoms, the nodules continued to invade Claudia’s body. In addition, she is losing weight and feels more and more tired. “Being very sporty, I had to stop all physical activity because my symptoms were bothering me. It was a very complicated phase. I didn’t like myself and I wanted to end it.” One day, the thirty-year-old decides to go to a specialist she has not yet consulted: a dermatologist. “Before going to see him, I took a photo of the lumps, because in general, I have a flare-up when I reserve the slot, but I have more when seeing a specialist. It’s why some people didn’t believe me. I also did some research. I came across a condition called ‘Verneuil’s disease’, which seemed similar to what I had, but I wasn’t sure. “I still printed the medical form that I found and took it with me.”
During the appointment, the dermatologist scans your entire body, “from my skull to my toes”. And, it is after the clinical examination that he makes a diagnosis. “He told me that it was indeed Verneuil’s disease. I didn’t even need to show him the printed medical form. It was a slap in the face, I was afraid of dying, but the doctor told me immediately reassured. Then I realized that I was relieved, because I was finally able to put my symptoms into words.” At the time, the young woman was in stage 1 of this chronic inflammatory skin pathology, of which “the stadiums go up to three in France and four in Belgium”. The practitioner explains to him that this condition is perhaps hereditary, because it has a genetic component. However, “I can’t really know since I was adopted. Another cause was also mentioned. I experienced a traumatic event, which caused emotional shock, in 2018, but I already had symptoms in 2016. So, we don’t know. According to the dermatologist, this probably accentuated the breakouts.”
“I have not been able to find a job even though I had my illness recognized by the MDPH”
“During the consultation, I was made to understand that no treatment can cure Verneuil’s disease, but medications help to space out flare-ups, which can be favored by diet for example. I refused to have resorted to Roaccutane and the pill, but I tested some treatments for three to six months. This was the case with Tolexin in combination with an ointment. These were effective, especially on the face, for a certain period. time, then the body got used to it and the treatments no longer had any effect.” Then he was offered surgery, “even though nodules and abscesses may reappear.” She still had surgery. “I had post-operative complications, especially with the threads at the stitches.”
With her multiple absences, Claudia found herself unemployed. “I have not been able to find a job. Since during outbreaks I cannot hold my position, I always tell employers about it during interviews. This slows them down or they make me understand that I am not I cannot have a normal contract in entertainment, even though I have had my illness, more precisely my invisible disability, recognized by the MDPH (Departmental Center for Disabled People).
Verneuil’s disease: “Those who suffer from it should not isolate themselves, be ashamed or deprive themselves, because we only have one life!”
If his professional life suffers, the consequences are also observed in his personal life. “I lost certain friends, because they didn’t understand my illness. My parents always gave me little thoughts, because they also didn’t understand. The person who saved me was my big sister who lives in Montpellier, but who is always there for me! In terms of love life and intimate relationships, pathology, “especially the nodules and abscesses killed everything. Recently, I was in a relationship with a person who I thought understood what I was going through, but in reality he didn’t. He dumped me, explaining to me that it was because of my illness”, declares the thirty-year-old, whose condition is now stage 2 and who currently no longer has treatment.
It was from that day on that she decided to speak openly about this condition on social networks, notably on TikTok where she is followed by more than 95,000 people. “Since no one is talking about it, I thought I would raise awareness and make them understand that this disease is not linked to poor hygiene, but also perhaps help some patients who are waiting for their diagnosis Thanks to my various videos, my loved ones better realize that it is really a disability. Those who suffer from it should not isolate themselves, be ashamed or deprive themselves, because we only have one life!
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