“I woke up one morning and I no longer had a hair on my head. I looked at myself in the mirror and I didn’t recognize myself: ‘Who is this person?’, ‘What happened to me?’. In the space of three days I had no no more hair all over his body: neither eyelashes nor eyebrows. From that moment on, nothing was the same as before.
As dramatic and painful as it may be, when you are diagnosed with cancer you already know what the side effects of chemotherapy could be and you have time to prepare yourself psychologically for hair loss. But I didn’t know anything, I was confused, and even the doctors I turned to were perplexed. My name is Laura Aprati and for the first time I decided to put my face on it, to make my voice heard through this testimony of mine, and tell what happened to me and what I kept to myself for a long time.”
Laura Aprati is a Rai journalist, she suddenly found herself without hair due to total alopecia aerata, an autoimmune disease whose cause is not yet clear. According to the latest estimates it affects the 0.2% of the population, regardless of gender, skin color and eating, hygiene and personal habits. There are 147 million people in the world with this pathology. If Laura decided to talk about it today it’s because, little by little, thanks to a new treatment, her hair has grown back.
His is a message of hope for the many who suffer from this pathology because, for the first time, there is a cure. But also of denunciation, against social stigma, and so that the National Health Service recognizes a disease that does not exist for them and that wigs are not so expensive for all the people who, due to pathologies, no longer have hair.
“My alopecia”, continues Laura Aprati, “was the consequence of a fibromyalgiaa rheumatic disease that affects the musculoskeletal system, but it was the baldness that weighed on me the most from a psychological point of view: you have to go to work, attend meetings, but it’s not you anymore. The external appearance is decisive in relationships with others, even more so if you are precarious: Illness puts you in a corner.
When it happened I had just started working again after over a year without a contract. I didn’t know how my colleagues and superiors would react, but I knew that I couldn’t afford to lose my job also to be able to cure myself. It was these considerations that made me decide to remain silent, I would have lived it alone. Not an easy but necessary choice. I overcame many fears, I was afraid that the people around me would notice. I rejected the idea of a scarf because if you have a turban on your head, anyone who looks at you will immediately think that you are sick and ours is not an inclusive society although progress has been made. At work, if you have a pathology, maybe they say ‘poor thing’, but there’s an afterthought: ‘Who knows how long her illness will last, I have to look for a replacement’, they asked me too. At that time I was sick, devastated, and no one knew how to cure me. We experimented, tried many therapies, and I was very lucky, I had doctor friends around me who supported and helped me, but what about the others? I think of the many in my condition who don’t have all this support.
HAIRCARE
Hair, when should hair loss worry us?
by Martina Manfredi
After the first shock, I locked myself in the house. At that time I didn’t have a partner, I was an angry wolf, angry at everyone. Within a week I decided to buy a wig, so I entered an unknown world, that of the hair market, a terrible market where profit is made on weakness and fragility. In 2013, a stick-on wig could cost even more than 2000 euro, and two were needed for maintenance. They were unbearable. More than ten years later there was an incredible evolution, then you had to put a glue on and every month remove everything to do the “service”.
There is a lot of speculation surrounding wigs. Human hair is purchased in India and Brazil for very low prices but in the shop it costs a fortune. Synthetic wigs cost less, but if you wear them and it’s hot outside it’s like having a plastic hat on your head, it’s crazy. If you sweat, they slip and tend to fall off. Not to mention the universe of charlatans ready to seize the opportunity and offer cure-alls that don’t work. Only science is decisive, but when you look for a solution and you don’t find it, even if you are intelligent and prepared, if they present it to you well you will take it.
I am a journalist and my job also involves appearing on video, so I “made do”. On TV the image is substantial. I know, there is the case of Silvia Mottathe host of Tv Talk who presents serenely with the turban, has alopecia like Jada Pinkett SmithWilly Smith’s wife, who in an interview spoke about the difficulty of accepting her condition.
Everyone deals with the disease in their own way, but I felt fragile, I didn’t feel like it, so I constantly changed my look: I wore short wigs, then curly, wavy, straight. Varying helped me. And then there was the makeup: you don’t think about how difficult it is to do when you don’t have eyelashes. You suffer from blepharitis because the sweat finds no barriers, the pencil drools. The lack of eyebrows, however, was not a problem, the tattoo was in vogue and did not arouse suspicion.
HAIR
Men, what to do when baldness progresses?
by Martina Manfredi
A change of perception
The first change in perception came thanks to a colleague, Valerio, who one day while we were shooting a story put me in front of a camera and I went without thinking about my wig, about my problems. I was focused on work. Well, that was a first step towards healing. It was 2016, three years after it all started.
In 2017, then I went to Mosul, for my documentary on the siege. I was on the front line and when I entered a field hospital, among wounded women, men and children I realized for the first time how much trouble had I gone to for nothing. Whatever you suffer from, seeing a child who can’t eat or hurt, hearing him scream, resets you. One day I was taking off my bulletproof vest and, along with the helmet I had on my head, the mobile wig also flew off. We all had a wonderful and liberating laugh. From that moment I began to have a different relationship with what had happened to me.
If you laugh, maybe it’s not over yet but you’re definitely close. I started to feel calmer, my body started to recover. And I met Giusy Giambertone who helped make my life easier: she makes wigs with suction cups, very comfortable, they stick to your skin and you take them off whenever you want. Her story is worth telling: she was making wigs for the cinema when her husband got sick and died of cancer. That experience brought her into contact with those who were suffering from cancer and chemo, physically and morally burdensome due to hair loss. So she transformed her business by searching for new formulas around the world. For example, caps on which to sew the hair which make the wig lighter and more comfortable. She has also created a “bank”: whoever wants can donate her hair and she transforms it into wigs which she donates, in the hospital, to those who cannot afford them. Because even the costs of this pathology cannot be overlooked. My social security fund does not pass these expenses “because they are not oncological”.
Then there was another decisive meeting, with Professor Alfredo Rossi (and all his staff of young collaborators), responsible for Umberto Primo’s trichology clinic. Thanks to him I was able to access a new drug that comes from the United States. I started the treatment last year and have seen a great improvement. In a couple of months I will be able to take off the wig and my eyelashes have already grown back. The wigs didn’t change who I am, they just “showed” it in a different way but seeing myself with my hair again was a very strong emotion. It was me again.
Alopecia is invasive especially in the mind, if you are not strong enough it overwhelms you. Hair, especially for women and children, they are fundamental because they define you, as well as having a strong symbolic value. When I got sick I was alone, I had no one to lean on. Precisely in that period I met a man who accompanied me on the journey. Having him by my side during my illness made me feel wanted despite everything. Relationships are not simple, this is also a problem, my mother, for example, never wanted to see me without a wig“otherwise I’ll feel too bad”, he told me.
Now another difficult step awaits me: taking off my “hat” or “movable head”, as I call the wig, to definitively return to what I was. In the meantime, however, I’m fighting why this disease is recognized by the Health Service and to tell everyone that a cure exists.
I’m talking about it now because I’ve “digested” everything that happened. When you’re in it you’re caught up in something else. You are so busy with other things that thinking about exposing yourself is a difficult step. I do it because it is important to know that science has made great strides and so has society. Something is still missing and we need to fight for it.”
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– 2024-05-01 10:49:36
