Perhaps we can remember the name “Asher syndrome” more easily with “Helen Keller”. Asher syndrome is the most common disease that affects both hearing and vision. Sometimes it also affects balance. The main symptoms of Asher syndrome are deafness or hearing loss and a eye disease called retinitis pigmentosa. Most children with Asher syndrome – depending on the type – are born with moderate to profound hearing loss. Asher syndrome affects approximately four to seventeen out of every hundred thousand people and accounts for about fifty percent of all cases of inherited deafness and blindness. It is estimated that this disease affects three to six percent of deaf children and an additional three to six percent of children with hearing loss. Asher syndrome is hereditary, meaning it is passed down from parents to children through genes. Each person inherits two copies of a gene; one from each parent. Sometimes genes undergo changes or mutations. Mutated genes can cause abnormal growth or function of cells. This syndrome has different degrees

In Iran, Asher syndrome is not well-known. There is no specific association in this field and children with this syndrome are deprived of education. Years ago, I met a mother who had a daughter named “Nazanin”. Nazanin had Asher syndrome and could not hear, see, or speak, but she had a strong social connection. She could easily recognize people, touch their hands and ears, and understand who had come to visit her. Her mother was always enthusiastic about her activities, but I believe that more than anyone else, her mother played a role in Nazanin’s success. “Jamileh Afrideh”, who has a beautiful and fitting name, has been by Nazanin’s side for years, being her ears, tongue, and eyes. Everyone knows her as Nazanin’s mother, because she prefers to recognize Nazanin’s abilities, but I know her as Jamileh Afrideh because of my documentary film; a woman who

Jamileh Afarideh is dedicated to her wish of transferring her knowledge to teachers and families of individuals with disabilities and hopes to do so by establishing an association to share her experiences in this field. The living conditions for most people with this syndrome are not suitable and require the attention of authorities. The first need for these individuals is to learn sign language and establish communication with others. Jamileh Afarideh has identified more than ten individuals with this syndrome, but it is estimated that there are more affected individuals; she recently received news that a one-year-old child has been identified in one of the cities in Fars province.

By utilizing and supporting Jamileh’s creation, we can provide a better future for individuals who will be born with this syndrome in the future. The effort that Jamileh has made may be considered parallel to the efforts of the late Jabbar Baghcheban, but necessary support must be achieved before it is too late.