YOUR STORY IN A NUTSHELL:
My name is Aline, I'm almost 29 years old, I'm a community manager and self-employed content creator. I love cats & chocolate :) Vintage globetrotter!
YOUR MEDICAL CAREER:
I spent all my childhood in Guinea and then all my adolescence in New Caledonia. These are two regions of the globe where we expose ourselves quite a bit. The sun is omnipresent, all year round.
A few years after my return to France, I had rashes under my face: at the bottom of the jaw and on the sides of my nose. It was purulent, it looked like eczema, it itchy. Then appeared tasks on the level of the mustache and the nose.
I didn't know what it was, I even bought mustache bleaching products... although the hair wasn't the problem at all! I had no idea what was happening to me.
You should know that my mom has lupus. It was her and my dad who quickly recognized the warning signs: the lupus mask and scab-like reactions on the face. Worried, they made me meet the teacher who follows my mother. After looking at my skin, they reassured us: it's not lupus. But on the other hand, yes, there is a problem. So he referred me to a specialist at Larrey Hospital. It was with her that we were able to investigate.
I first had an interview with this specialist, rich and dense in questions: how long I had lived in Africa and New Caledonia, genetic background, sun capital, food, treatments, how long I exposed myself to the sun, how many hours I sleep, what are the reactions of my skin following an exposure...
It wasn't easy, I was 22, a bit in denial... and at the same time I wanted to understand what was happening to me. I had a lot of very conflicting emotions inside me!
During this interview, I had the impression that I was not taken seriously. As if the fact that mom has lupus created in us an irrational fear (when we now know that genetics plays a big role in autoimmune diseases).
But whatever, she still made me take tests based on UV rays. I was exposed to UVB on the shoulder and UVA on the lower back. A superb bob that literally burned me and left a scar on my back.
The test was over 3 days. Every day they would increase the intensity to see how my skin would react, to create a push. I didn't react to UVB but UVA, I understood my pain! I was so hopeful that a flare would happen to be taken seriously that I was almost relieved when there was one in the famous UVA square and I heard the specialist say "ah yes yes indeed , there is something! »
They did a biopsy on the flare-up (and burned) area for analysis. For the anecdote, I still blame the person who put the bandage on me after the biopsy, on the burn. Obviously when it was time to clean the wound, everything came off. So I live with a not really natural scar that I try to hide (fortunately over the years, it has faded), and with a small hole in my back, where the biopsy was done.
Following the analyses, the verdict is in: it is a polymorphic lucite. Polymorphic Lucite What is it?
There is the summer lucite that will attack the body: chest, arms with small itchy white pimples that should not be scratched.
Polymorphic lucite is much rarer, it appears from early spring until autumn It has the particularity of reoccurring with each exposure to the sun, which is very disabling (unlike summer lucite which heals in a few days, even if it can come back the following year). It is a chronic disease, which leaves lesions on the skin and which requires medical treatment. The term "polymorphic" comes from the fact that there are many types of lesions, similar to those of lupus, solar eczema, prurigo... Clearly understand: pustules, spots, red patches.
For me, my rashes are all over my face, but it's starting to spread to the rest of my body.
The most painful thing is not the pimples. That's what I see in the mirror. I saw my face change.
I was then put in touch with a dermatologist specializing in sun-related skin problems. She put me on Plaquenil, an antimalarial that helps limit flare-ups (but doesn't cure!).
At first it was horrible. My body was struggling to adjust to the treatment. It took some time to find the right dose. Muscle weakness, lack of energy, shortness of breath with the slightest exertion, loss of appetite, with lots of diarrhoea. I lost 6kg in 3 weeks.
Today, I have to take the treatment from March to September, as well as food supplements.
But in the end, it was above all a question of changing my habits: whether it was food, constantly looking for shade, preferring the river to the beach (more shade and less reverberations). I always go with an anti-UV tent (sun shelter) to be in the shade and I apply cream every hour. This way, I manage to minimize flare-ups.
On the other hand, in the middle of a push, it's quite hard. My body reacted, my immune system fought against the sun's rays and I was extremely tired. In addition to the visible reaction, there is also the invisible.
WHAT HAS BEEN YOUR BIGGEST CHALLENGE?
Accept me. I still have spots on my face. Some lesions also left holes in me. Some mornings, I rub my face thinking that maybe I can get the skin to peel and the spots will go away.
I am very flirtatious, feminine, I like to take care of myself and I have always been like that. Today, to see me all stained, to see them spreading on my face, it's difficult. I find it hard to accept myself without makeup, even to get a baguette.
At times I have the impression that people only see that on me, that they think it's not a pretty sight. In push I do not go out at all, I stay at home. I am very uncomfortable and I lose confidence in myself.
One day, something clicked. I was late for work, no time to put on makeup, loose hair and a very kind male colleague said to me: "Aline, it's your charm". It did me a lot of good. It's silly, but that it comes from a guy, it touched me a lot. Since then, I try to do at least my groceries or gas without makeup.
I know, this may sound ridiculous. But makeup is a bit like a mask: it protects me, hides me. And yet it's a vicious circle because it's not terrible for my skin either.
WITH YOUR LOVED ONES HOW IS IT GOING?
My family was very worried. I was still a baby when mom declared her lupus erythematosus and I don't remember. On the other hand, my big sister and my father saw the state of my mother.They were afraid that I had the same thing
At the time, lupus was not as well known as it is today, it was not managed in the same way as it is now. After giving birth to me, she had a big peak and was between life and death, we almost lost her. Fortunately, she met a lupus specialist who saved her. After being hospitalized in intensive care for a year, she underwent chemo and survived. But it was on a thread. I think the fact that I was just born helped him a lot and gave him the strength to fight.
I have been told, if you have children, you will have to be vigilant. Indeed, hormones can trigger the disease.
My darling was a bit lost. Not having experienced any serious illness around him, he did not really know what to do or how to react. We were young too, and when you're 20, you don't want to think about medical treatment. You want to be free, to be able to live outside, eat on the terrace, spend time on the beach...
In my daily life, if my friends are now used to it, it is more complicated with the people I meet or during client meetings. I have to explain each time why I can't go in the sun. I have already been told: "Oh, is that possible?" Yes, it is possible, and I preferred to do without it!
WHAT IS YOUR RELATIONSHIP WITH THE SUN?
I love the sun, I have always lived under the sun. However, it didn't do me any good. I would say that I have an adversarial relationship with him. It's kind of the story of my life.
HOW DO YOU PROTECT YOURSELF?
A good food base is essential. There are certain foods to favor depending on the pathologies. I also take food supplements to prepare my body for the first rays of the sun.
For my skin, I have a special sun intolerance cream, also a 50+++ index cream that I wear winter and summer and a hat to protect my face well. I always favor shaded areas, in the street as well as in the car (for example, I move the sun visor to protect me depending on the direction of the sun).
I'm lucky not to have any problems on the rest of my body, I only have my face that needs to be well protected to avoid flare-ups.
It's the family motto "Life is beautiful".
Sometimes when there is a little down, I say to myself no: you have to bite into life to the fullest. We don't know what tomorrow is made of, we have to take full advantage of it, even the complicated moments that allow us to appreciate the good ones even more.
ADVICE FROM "GRANNY"?
Life is good?!
It depends on what kind of advice, some go through dramatic times. For me it is not at all, it is more a question of organization & acceptance. Afterwards, I believe a lot in karma: if something happens, it's not for nothing, it's because it had to be so. You have to know how to welcome it, digest it, adapt and start over again.
You can find Aline on her account Instagram & Facebook !