“What's wrong with your eyes?”: I have a coloboma of the iris

Coloboma is a congenital anomaly of the eyein which the integrity of one of its structures, such as the eyelid, iris, retina, or optic nerve, is impaired. Normally, their formation is completed by the seventh week of fetal development, but sometimes this does not happen and a defect or a hole remains in one of the eye membranes - this is the coloboma. Sometimes this genetic condition is inherited, but it can occur for the first time in a family. Depending on the location, a coloboma may or may not affect the vision or appearance of the eye. Stylist Zhenya Kometa told how she lives with a congenital colostomy iris and what she can advise parents of children with this feature.

OLGA LUKINSKAYA

I was born in Tashkent in 1991, the second child in the family. Why I have a defect in the iris - no one knows, in a family everyone has normal vision. True, during pregnancy, mother experienced severe stress - she lost both parents, and then she learned that she was pregnant with me. She was very bad, did not want anything - but in the end she endured me and now says that I saved her life.

While I did not know how to speak, no one understood whether I see how I feel and whether I should interfere. According to her mother, she was surprised that I could not distinguish objects near, but in the distance I saw better than her. In kindergarten I put on my first glasses. My eyesight was bad (I have myopia and astigmatism), we often visited doctors, but there was no talk of radical treatment - the doctors said that surgery was impossible. I always had a lot of friends, but, of course, at school sometimes they called them glasses, it was insulting. I didn’t tell anyone about this — I could cry a little and go on. Friends in the yard always paid attention to my eyes: someone admired, and someone even scared and ran away.

I remember once my mother and I went to the open door to the hospital, where experts from the United States arrived. I boasted a couple of learned English words, and we very nicely talked with the doctors in a playful way. They examined me on some cool apparatus, which we did not have then, gave me toys. But even doctors from America could not do anything, since the coloboma is an underdevelopment of the eye and at that time technology did not allow it to be corrected. Nevertheless, I did not experience discomfort: there was no pain, no photophobia. At thirteen years old, when my parents and I moved to live in Moscow, I began to wear lenses and wear them to this day.

I always had an exemption from physical education, the doctors did not allow me to run, jump, strain - but, of course, as a child I still rushed around the yard with other children. My eyesight deteriorated with age (now I have minus eleven), but I only adjusted the lenses, periodically undergoing preventive examinations. At the age of twenty, I visited the Helmholtz Eye Hospital where I was offered two types of interventions. First, it was possible to correct vision, as many people do with myopia, without coloboma. The result, however, most likely would have been short-lived. Secondly, it was possible to conduct an aesthetic operation that would change the appearance of the pupil (aesthetic correction of the shape of the iris is one of the most difficult ophthalmological operations; color contact lenses can also be used to change the appearance. - Note Ed.).

I never worried about how my pupils look like - I took it as a given, did not hesitate, did not hide from people. Once on the Internet, I met a girl from Kazakhstan who has the same diagnosis, only blue eyes and one hundred percent vision. Then I finally realized that a coloboma may not affect vision in general, it is only a pupil defect - I just have myopia and astigmatism in the appendage. At the age of twenty-five, I started practicing fitness, carefully listening to sensations. I live like everyone else, spend a lot of time at the computer or with the phone, do not take medicine and feel like an ordinary person.

It happens that in a conversation with new people they look at my eyes, admire, call someone else to see. I constantly get compliments. Now I am twenty-eight, I'm married, I have a favorite job and I plan to become a mother. I have always been sure that I will have a cesarean section, but the ophthalmologist explained that it is quite possible, not necessarily - finally, however, a council of doctors will finally decide.

From the age of twenty-three, when I started posting posts with the hashtag # kolobomaraduzhki, I began to receive a huge amount of personal messages. Basically, they write to me moms who are still very young or just born children with the same peculiarity as mine. Parents are worried, but there is little information: the doctors can’t really say anything, but the child doesn’t speak and cannot communicate his feelings. I am asked to tell about my life with this diagnosis, about how I grew up, if they didn't hurt me in my childhood, what my eyesight was, if I did operations - they ask many, many questions.

I answer questions, wish you health, calm and always give the main advice - love your children as they are. In no case do not show them your anxiety about the eyes, because the child is "not like everyone else." My mother kept a calm approach, and it seems to me that it helped, I remembered my peculiarity only when they asked me: "What is it with your eyes?" I urge parents to tell children as often as possible that they are beautiful, so that in the future they will not be shy of their appearance.