A passionate advocate for albinism awareness and a vice president of the “Albinism Association” in Türkiye, Şeyma Yazar is striving to raise awareness and ensure the rights of individuals with the genetic order are being met.
A 26-year-old who was born with albinism not only works actively within the association but also provides psychological support to students at the secondary school where she is employed.
On June 13, International Albinism Awareness Day, numerous nongovernmental organizations (NGOs) organize various activities to combat discrimination and social violence faced by individuals with albinism and to raise awareness about this condition.
Albinism is a rare genetic disorder characterized by the deficiency of melanin pigment in the hair, skin and eyes.
The Albinism Association, which was established in Türkiye in 2013, also carries out its activities to increase the quality of life and raise awareness by ensuring that individuals with albinism and their families benefit from their rights in line with their needs.
Having graduated from the Department of Psychological Counseling and Guidance at the prominent Boğaziçi University, Yazar's involvement in the association began during her undergraduate years, and she assumed the position of vice president in December last year.
Speaking to Anadolu Agency (AA), Yazar explained that her brother was born with the same genetic condition, pointing out that their parents were relatives.
Referring to the skin and eye problems in albinism, the young psychologist said that her family did their best but that yet they faced some difficulties in their education and social life due to limited knowledge regarding albinism.
Stating that one of the main problems she had in middle and high school was not being able to see the board and not being able to access large print materials, Yazar highlighted her voluntarism in the Albinism Association as part of the awareness studies.
Explaining that albinism is classified as a disability due to vision problems encountered in the albino community, Yazar said the overall prevalence is estimated to be one in 17,000 in the world.
"It is considered that there are 4,000-5,000 people with albinism in Türkiye. A diagnosis of albinism can be made when the baby is born. The family should be informed, and the child should be taken for regular checkups by a dermatologist and eye doctor. This (type) of vision impairment can not be corrected with glasses. There are some devices, but the vision problem cannot be completely corrected," Yazar stated.
Emphasizing that being an individual with albinism had an effect on choosing the psychological counseling profession, Yazar furtherly stressed that she had been unaware of the rights that are granted to children with low vision or any disability in their education life.
"People need to know and practice these rights. 'If I become a psychological counselor at school, I can help a child with any disability or albinism as much as I can' I thought," Yazar highlighted and said there tend to be students from many disability groups in schools.
The existence of the counselors and their work with disabled individuals is of great importance, she furtherly noted.
She also touched upon the parents' perspective, stating that the parents' protective behavior can lead to making the children asocial.
"Maybe the child wants to learn to ride a bicycle, but they prevent it. There is no such thing. In a safer environment, the child can also ride a bicycle, walk and do everything. Just to know the child's needs there, to act accordingly, it is important to provide a safe environment," she said.
"The child may not know or defend their own rights, but it is important for families to know those rights and to defend their rights and to fight until they get it," Yazar added.
Referring to the work of the Albinism Association, Yazar said that the meetings as part of International Albinism Awareness Day will be held in big cities such as Istanbul, Izmir and Ankara.
This year's theme focuses on inclusivity, with the motto: "Diversity gives strength, inclusivity unites."
