An interview with Burcu and me came from Bianet newspaper published on the internet in August 2014. The content was attractive, it was a good opportunity for us to raise the unknown issues about Albinism and correct the wrong ones, and in this respect, it was a good opportunity for us to be told about the Association and Albinism correctly. The reason for not seeing our cool photographs as in other newspaper clippings is that questions and answers are made by e-mail. Burcu’s limited to phone calls. But it was a good work in terms of explanatory.
Log:
Date: 26.08.2014
Media: Bianet
Author: Melike Futtu
Link:
“Albinolar Hakkında Bilinmeyenler ve Yanlış Bilinenler”
Scan:
Copy (Google Translation) :
Unknown and Misconceptions About Albinos
One in every 17 thousand people in the world lives with albinism. Albinism Society, bianet of the difficulties faced by albinos in Turkey, told fancied wrong and right about albinism in demand.
Unlike common belief, albinism is not just a skin disease. People with albinism, known as “albino” among the people, start to experience vision loss over time. Due to this loss of vision, the state is considered to be between 40 and 90 percent disabled.
One in every 17 thousand people in the world lives with albinism. In Turkey 3 thousand – four thousand albinism is estimated to be individuals.
Adults and children with albinism albinism is a group founded in 2012 by the family and the first social platform that makes regular studies on albinism Albinism Society in Turkey, the society aims to raise awareness on this issue and the state. Society also all the developments on this issue, follow the research, diagnosis and treatment also is conducting studies for the work to come to Turkey.
What is albinism?
Albinos in cinema |
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In the screen, Albino characters are always reflected as evil and cursed characters. For example; The twins in the Matrix series are albino. Spartakus actually succeeded in defeating an albino gladiator and found a place in the gladiator world. The evil guardian in Dan Brown’s book and then in the movie starring Tom Hanks is albino. However, people with albinism are not bad and cursed as they are reflected, but their intelligence choices are generally above average and naive. |
We talked with President of Albinism Association Burcu Çakır Keskin and Vice President Ali Şengöz , who is an adult with albinism , about social rights, state policies and the activities of the association.
What is “albinism”?
Albinism is basically a genetic condition. Each creature has pigments called melanin, which gives it its color. Pigments are the molecules that make up the colors of all objects and can be of different colors depending on the genetics of the creature. In the person and creatures with albinism; This melanin pigment, which gives color to the skin, hair and eyes, is either absent or very little due to a genetic deficiency.
Albinism also depends on heredity and passes from one generation to the next with genes. The gene responsible for albinism; it is the gene that carries the knowledge of how to produce melanin pigment to the eyes, skin and hair. Genes related to albinism also come from both mother and father, and both genes related to the production of melanin pigment are not working properly.
Albinism Association
As far as associations in Turkey “albinism” the first social platform built on. Was there any other community or initiative before 2012?
An association called TEALDER was founded in Ankara before; but it was not able to operate. Thereupon, the Albinism Association was established with the participation of a group of adults with albinism who came together based in Istanbul and families with children with albinism, unlike the institutional stage of the previous association.
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Ali Şengöz, Vice President of Albinism Association |
What is the purpose of the Albinism Association?
We want to improve both the diagnosis and treatment work and social awareness are trying to come to Turkey. We want to help individuals with albinism or their families who need help from social pressure, incomplete information, inadequate attention, or financial reasons.
One of the biggest shortcomings is to make studies to close the gap in the Turkish source book on albinism; By organizing informative seminars in education and health institutions, raising awareness on this issue is also among our goals.
For example, we are releasing our book “Raising a Child with Albinism”, which will soon be the first printed source on this subject and whose income will contribute to our association. We aim to respond to all known mistakes about albinism.
The state has no policy on albinism
Wrongs related to albinism* Individuals with albinism can go to the sun by taking the necessary precautions. * The eyes of individuals with albinism are not red, but blue or gray. It looks like red in the flash light. * Albinism is not a disease, but a genetic condition. * Albinism occurs due to genes from both mother and father. It is not sufficient for one of the parties to be a carrier. * Children of a person who marries an adult with albinism, who is not a carrier of the gene for albinism, are carriers but not albinos. Because albinism is a recessive gene. * Children with albinism grow just like other children. * Not only in humans, albinism is seen in all living things. * Eye problems experienced in albinism cannot be corrected with the use of glasses. Play in the eyes is called Nistagmus and occurs as a result of deformation in the eye muscles due to the sensitivity to light. * In school period, they need support from less vision. Book, exam papers, printed with large font. If they are supported with assistive devices such as handheld binoculars, telescopic glasses, school success will be at a normal level. * If they do not regularly use dermatological products, sunscreens, they are more likely to get skin cancer at an early age. |
What kind of problems do individuals with albinism face in social life?
Since school age, they start to experience various problems due to differences in their appearance. It is possible to talk about problems due to low vision and financial difficulties in accessing auxiliary devices. The fact that there is no rehabilitation study other than a few centers on this subject also creates problems. Although individuals with albinism have to use dermatological sunscreens for skin protection, social insurances are not comprehensive enough to meet this need.
In addition, it is possible to talk about families with children with albinism, lack of information about the situation of their children, lack of information and psychological support, which is important for the first period. Difficulties faced by children in schools; Failure to see the board from afar and the lack of adequate support for these children due to lack of information are also problems.
How do you evaluate the policy of the state towards individuals with albinism? Is a solution produced by the government to complement the shortcomings you mentioned?
In fact, it is hard to say that the state has a policy on albinism to date. As we mentioned, children with albinism need to receive special help in schools and receive sunscreen assistance under social insurance. He also needs full support for sunglasses, optical devices. However, there is currently no study on these issues. Nevertheless, we hope that the state will find a solution by drawing attention to these issues with the activities of our Association.
Is it possible to talk about policies that support individuals with albinism in the world?
Especially in America. When a child with albinism is born, vision therapy for the child and psychological support units are assigned to the family. Before the children go to school, how to help them at school is planned and a suitable environment is prepared for him. His books are printed with larger fonts, and exams are presented in the same way. The rights of adults with albinism are protected by associations and social platforms. Fuses provide their auxiliary devices and cover the costs of sunscreen. Our application petition must have been sent to SGK. We demanded that the sunscreens, which are vital for individuals affected by albinism, are provided by SGK with a report and for free. Many scientists conduct studies on diagnosis and treatment both in America and Europe, and these studies are supported by state funds.
National Albinism Conference will be held
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Albınm Association President Burcu Çakır Keskin |
On September 7, you organize the 1st National Conference of Albinism. A conference you plan to continue in the coming years?
The main purpose of organizing the conference is to bring together individuals and families who need information on this subject, to enable them to share their own experiences and to receive technical information from experts. In addition, telescopic glasses, sunscreen, Turkish source book, etc. We aim to inform individuals and families by exhibiting equipment and resources on the subject. This conference is a first in Turkey, we intend to continue in the future by providing international participation.
Can you talk about the subtitles in the conference? What will be discussed and discussed?
We will give general information about the working areas of our association, and we will give direction to the activities of our association in the coming period by taking the opinions of the participants. Our adult friends will provide basic information about albinism and will address the issue of living with albinism. A lecturer from Hacettepe University will be our guest about the educational needs of children with albinism. We will evaluate the eye problems with an operator doctor. While an expert on information about assistive devices and rehabilitation studies will inform the participants, we will have a section on albinism and disability discussions.
We will share the information we got from the European Albinism conference that we attended in April 2014 with all the participants, and finally, a photographer who studies photography on Albism will be giving information about his work. On this occasion, the participants will also know each other and exchange information.
Can you tell us about the upcoming events of the Albinism Association? Are you planning an international event?
We started to appoint regional representatives right after our establishment. Through these representatives, we aim to organize meetings not only in big cities but also wherever we can reach. Bringing together individuals with albinism and families facing this situation is among our primary goals. We aim to organize our national conference annually or biennially.
Our well this year and we join our association on behalf of Turkey, made at the international level Albinism 2. The European Conference was held with Spain Albinism Society organization. The next conference was decided to be organized in 2016 by the Italian Albinism Association, and after our association’s work has reached a certain level, we would like to host this conference.
“We need all kinds of manpower for today”
“We need all kinds of manpower today,” says the Albinism Association, calling for volunteers who want to work with them.
You can contact the Albinism Association from the Albinism Friends group on Facebook, or by sending an e-mail to bilg@albinizm.org.tr . (MF / MC)