Alopetianka: Happiness Within
Journalists of the Global Women Media got acquainted with the members of Alopetianka community just over a year ago. Their close informational cooperation has started and grown into a warm friendship since that time. The community experienced significant changes this summer. Marina Zolotova, the author and leader of the project, decided to devote her time to her family and search for new ways of the development of her potential. She handed over the reins of the community to her successor Svetlana Kononchenko. Today, we are pleased to introduce her to our readers.
leader of Alopetianka project aimed at helping women with alopecia
Alopecia is an autoimmune disease characterized by partial or full hair loss. It can happen to any individual at any age. Although the disease does not cause any physical pain, it is often psychologically difficult, especially for women.
Alopetianka community was created to support girls and women with this problem. It is always much easier to go through difficult situations if there are people who understand you and, most importantly, people with similar experience.
Alopetianka members are amazing women who inspire people around them with their harmonious beauty, inexhaustible positive energy, and strength and freedom of spirit. Svetlana Kononchenko, the new leader of the project, belongs to that very type of people. During the interview, she told us about the goals and tasks of the community and shared her personal story.
– Tell us about yourself. When and how did you learn about the community?
– Now I have three children. I am a married woman and work as a leading accountant at one of Moscow’s major companies. Alopecia came into my life unexpectedly and abruptly after my last childbirth. I have been a woman with alopecia for 10 years already. Today, it does not prevent me from being a happy person. However, when I first encountered the disease, I perceived the situation quite differently.
At first, I suffered a lot, tried to cure it, and felt sorry for myself. Now I understand that alopecia is a reason to reconsider my life values, to invent a new image for myself, to find new contacts, and to discover new aspects of life.
After facing alopecia, I started looking for women with the same experience. That’s when I found Alopetianka community. On Marina Zolotova’s page on social media, I saw that the participants of the project held a meeting in Saint Petersburg, and suggested organising such an event in Moscow. It was several years ago and the community was just beginning to develop. We gathered in a small group of only 19 people. However, it is difficult to describe in words how much emotions, support, and energy we got. The number of participants increased many times with each new meeting.
I have been an active member of the community for several years. Last year, Marina Zolotova offered me to become a co-founder of Alopetianka non-profit organisation and its general director. It was a great honour for me to be chosen for that.
This is my first social project. I feel great responsibility and doubts on the one hand and incredible inspiration and enthusiasm on the other hand. After all, it is so great to be able to help those who need your support.
– What goals and challenges does the community have today?
– First of all, our goal is to support our members and to form the right attitude of society towards people with alopecia. We want women with this autoimmune disease to be able not to hide their ‘uniqueness’ from others. Of course, we don’t call on everyone without exception to give up wigs and other accessories hiding their lack of hair. We believe that, if a woman does not want to constantly mask the symptoms of alopecia, she should be able not to do so.
Wigs, kerchiefs, and hats must be beautiful accessories that complement a woman’s image, not a tool to protect her against the public’s negative perception of alopecia.
Society’s attitude towards bald men is quite calm. However, there are always many eyes upon women without hair. In some companies, there is a dress code for women with alopecia despite the promotion of the values of tolerance and mutual respect in the modern world. They must wear wigs ‘not to embarrass’ other employees or clients. That seems quite unfair. That is why I believe that, today, we need to bring up a culture of acceptance and respect for those people who are not like most others. To do that, we need to talk more about such people.
There are many children among people with alopecia. Every parent is very concerned about the future of his or her child and the child’s acceptance by society. I hope that our informational support to people with alopecia today will make life easier for the younger generation tomorrow. We create this world not only for ourselves.
– Are many women with alopecia ready to open themselves to society? It seems to me that they must first achieve a certain level of inner freedom.
– I will tell you how it happened in my life. At first, I always wore wigs or kerchiefs, thus hiding the lack of hair. I must say, it is really constant stress. Other people don’t think about it, but people with alopecia have to think through everything in detail. It is necessary to fix the accessory in such a way that it is not shifted under the influence of wind or in case of sudden movement. Long flights or trips, visiting a swimming pool or sauna become an entire adventure. Hiding the lack of hair from others, we are constantly afraid that someone will reveal our ‘secret’.
Once I understood that I was tired of being afraid. Then I took a decision that I would open myself to society. No matter how frightening and exciting it would be. I would rather survive that stress once than be afraid every day of my life.
The society accepted me and all fears turned out groundless. Now I even go to work without a wig, and, for me, kerchiefs serve only as the beautiful accessory supplementing my image.
The number of Alopetianka community members is constantly growing. When new girls come to us, I ask them about what help they need. Everyone unanimously speaks about support. Many women with alopecia are ready to open themselves to society. They do not want to hide and live in constant worries. All they need for that decisive step is the support of those people who have already overcome those challenges. Our community gives them such support.
– What projects and activities are particularly important for the community today?
– We are all in constant contact. We have an online chat, where participants from different regions of Russia communicate with one another. The community also has ‘experienced’ women with alopecia. They are always ready to call or meet those who need support, answer their questions, give them advice, or discuss what disturbs them.
We have regular live meetings with our participants. We travel together to any event or holiday. One of such meetings, for example, was recently held at the seaside.
As for projects, it happened that one of my neighbours turned out to be a director and a cameraman. We made a documentary film about alopecia and women who faced this problem with Alopetianka members starring in it. Now the film is in the editing phase. Our community will start promoting it on various venues as soon as it is ready.
All of that is a good way to spread information about the phenomenon of alopecia.
Of course, as a new leader, I want to contribute to the community. We have formed a council to discuss our new activities and further opportunities.
I believe that there will be more interesting projects in the near future. Women with alopecia are very creative and proactive.
– What would you like to wish women from all over the world?
– I wish them to always feel attractive and charming. A lot depends on how we feel about ourselves. I wish that no external factors could negatively affect our self-esteem. Life is beautiful and we are also beautiful in our way. Our fate does not depend on the presence or absence of hair or any other external features. It depends on our thoughts and on what fills the human soul and heart.
Viktoria Yezhova, Global Women Media news agency
Translated by Nikolay Gavrilov