After the Evening newspaper in 2014, we are once again in the Milliyet newspaper as a wonderful trio. The team, adorning the market supplement from the headlines, again sincerely shares its perspectives and stories on albinism.
Log:
Date : 21.06.2015
Media: Milliyet Gazette
Author : Metin Uyar
Link:
“Bizi hasta zannedip yanımıza yaklaşmayanlar bile oluyor”
Scan:
Milliyet Pazar- Kapak 
Milliyet Pazar – İçerik
Copy (Google Translation) :
This past weekend Albinism June 13 World Day was celebrated for the first time in Turkey. Albinism Society of Turkey, Antalya JCI Young Leaders and Entrepreneurs Association of Turkey with Antalya Metropolitan Municipality’s motto organizations held in Antalya in cooperation “Albinism Awareness Register Support Register with your presence” du.
The Albinism Association, established at the end of 2013, is also working to raise awareness on the issue. We met with Board member Moti Romi, Gizem Dönmezer and Ali Şengöz to talk about “living with my albumin”. I immediately noticed the problem of seeing with albinism. Romi, whom I met a little earlier, searched for Dönmezer and brought his cell phone close to the eye. Very lively people wouldn’t have thought that I could laugh so much when talking about a genetic difference. Dönmezer said that my corner was a tight follower and said, “Why are they white? You will throw the title, for sure. ”
“He thought me a ghost”
– How would you express living with albinism?
Gizem Dönmezer: I am used to it now, but there were times when I had a hard time. Since the color of our skin is different, we get different reactions, looks, and we are excluded. There are also those who think that it is an infectious disease and does not want to approach us. I just came by metro. A woman sat next to her with her child. We smiled with each other with the boy. The woman turned the child’s head. He turned his back to me and said to his wife, “Oh, don’t talk to people like that, the child’s psychology will be impaired.”
Moti Romi: We also have tragicomic experiences. We went to a friend’s house at a Christmas party exit. Two friends ahead, I knocked at the back. When the person working at home opened the door and looked at us, he said, “Oh my God,” he closed his face in fear. First, we were worried that something happened to the woman. It turns out that when he saw me in the back, he thought he was a ghost and was scared. A friend from Albinolu thought he was a stone doll and was looking for a price. Also, “Why are you like this?” When he got the answer to the question, “I was immersed in bleach, I drew it,” there are serious believers.
Ali Şengöz: I don’t define albinism differently, I see it as something like being a blonde or a brunette. When looking like this, the people around do not differentiate either. The only thing that makes our life difficult is the vision problem that albinism brings with it.
“I finished the university with binoculars”
– How did the vision problem affect your school life?
Moti R .: When I was in high school, there were no telescope glasses. One day I noticed that I was very comfortable with binoculars at home. I went to class with binoculars the next day. I looked, I see it very comfortably from the back. Despite the fact that the doctors said to my family “Your child cannot read,” I completed my high school and university life with binoculars. When I was in elementary school, I used to go to the beginning of the board and keep in mind what I wrote and returned and wrote in the notebook. I often heard the “Moti get off the board” reproach from my friends.
Gizem D .: When I asked my name at school, I was saying “Albinoyum”. First I said this was not contagious, then I was telling myself. When I first entered high school, we met new people, two days later, no one started talking to me. Stop a person and say, “Why aren’t you talking to me?” I asked. “I greeted you, you did not answer me, and I am not talking to you,” he said. However, it is impossible for me to see a person who greets me from afar unless he calls out.
What arrangements should be made for everyday life for albinism?
Gizem D .: The color of the carpet and furniture should not be the same. If the carpet is white, the furniture should be red.
Moti R .: If a bright line is placed on the stairs we go down to the subway, which will allow us to distinguish it to the end of each ladder, we will move much more comfortably.
Gizem D .: We have a depth sensing problem. As I got off the sidewalk, I thought it was a bigger sidewalk, and my foot crashed very hard and my waist fell into the void. I also miss bus all the time. Because the bus goes until I see the bus. An audible sensor system telling that the bus is arriving should be placed at the bus stops.
What does the Albinism Association do?
Gizem D .: Our association is a very new association founded at the end of 2013. As volunteers, we translated a foreign book called “Raising Children with Albinism ”. With the support of H2O Publishing, our book took its place on the shelves. While this is a very useful resource for families with albinism, people can support our association by taking the book.
Moti R .: Last year we held the 1st Albinism Congress in Ankara. Here, both families and albinis shared information and contributed to social awareness. We also discussed our problems here. For example, there is a serious demand by SGK that sunscreens and telescopic glasses are provided free of charge to albinism.
EXPERTS TELLED
“They must be protected from the sun”
Assoc. Dr. Emek Kocatürk Göncü (Okmeydanı Training and Research Hospital / Dermatology)
-Albinizm is a genetic difference caused by the partial or complete absence of melanin pigment, which gives color to our hair, skin and eyes. There are four main types of this problem, which can be seen every 20 thousand and affect all races. For most types of albinism, both mother and father must have a defect in the gene associated with melanin pigment production. Depending on the type of change in the gene, albinism’s hair can be white, its skin pink or its hair and skin color normal.
-The lack of melanin pigment makes a difference in appearance and causes skin and vision problems. These people are extremely sensitive to the sun, so they are prone to sunburn and skin cancer. They must be protected from the sun.
“90 percent can be diagnosed by eye examination”
Professor Dr. Şule Ziylan
(Yeditepe University Faculty of Medicine, Department of Eye Diseases)
-Albinizm is not always seen with hair, brow whiteness and skin pink. There is also ocular albinism that holds only the eye. But in every individual with albinism, we see that the colored part of the eye is very light blue and the red reflection in the area behind it is very high. For this reason, 90 percent of albinism can be diagnosed with an eye examination, usually ophthalmologists are already diagnosing it.
When there is no color pigments at the point of view of the eye, vision deficiency appears. The rate of seeing albinism is 10 percent, they cannot see people and objects far away clearly. Visual quality is tried to be enhanced with glasses and those with higher levels are trying to increase with binocular glasses. Surgical methods
do not work very well .
Since there is no pigment cell protecting against light in the eyes, the eye is disturbed and damaged by light. Albinism must wear dark glasses and a cap.