Mar 02: Artist Ayşe Nihan Uğuz, who is forced to live with a rare genetic disorder, has opened eight solo exhibitions and many joint exhibitions for her paintings during her career.
A member of the International Plastic Arts Association, Uğuz’s works have been displayed in congress halls around the world thanks to a competition organized by a US medical company
A Turkish woman with a rare genetic disorder is proving that a severe physical illness presents no barrier to becoming an accomplished artist.
“My health problem does not prevent me from painting,” said Ayşe Nihan Uğuz, who suffers from Mucopolysaccharidosis, or MPS, a disease that generally affects the skeleton and has left the 35-year-old just 90 centimeters tall. “I can draw bigger paintings than my body thanks to my special chair. There are lots of people like me; they can paint or get involved in another branch of art, too. I hope all people can see the world with hope.”
Ayşe Nihan Uğuz, who creates paintings from her specially designed chair, has opened eight solo exhibitions and participated in many joint exhibitions. One of her paintings has been exhibited in congress halls around the world as a result of a painting exhibition organized by a medical company in the United States that was centered on the theme “How do we see life?”
A member of the International Plastic Arts Association, Ayşe Nihan Uğuz continues working in the atelier she opened with three painting teacher friends.
Diagnosis in Austria
The artist’s mother, Aynur Uğuz, said her daughter’s health problems appeared when she was 9 months old. “When the doctors determined there was a problem, part of her body below the hip bone was encased in plaster for six months. When it was removed, she used a steel corset for two years, until the age of 4. Her mobility got better sometime later but we thought that there was another problem and took her to Austria to consult foreign doctors.”
After detailed research in Austria, doctors diagnosed Ayşe Nihan Uğuz with Mucopolysaccharidosis Type 4. Aynur Uğuz said they were shocked when they received the news.
“It was an unknown disease and we did not know what to do. The doctors told us that it was an incurable disease and they did not have experience with it. We even went to a professor in Siberia to find a cure. Helplessness is very hard but we have never lost our hope and continued to struggle,” she said.
She said her daughter’s type of MPS was seen in one of every 300,000 births, according to statistics in Europe. Only 152 people in Turkey are known to suffer from the disease.
Aynur Uğuz said her daughter had visual disorders at the age of 6 but that she had been interested in paintings since an early age. Her daughter was completely focused on painting after graduating from high school and took education from lecturers at Çukurova University’s Fine Arts Faculty in the southern province of Adana, she added.
The mother said she was a very talented girl. “She is very happy while painting. Her world changed when she started it; we are proud of her.”
Aynur Uğuz also said her daughter would open an exhibition March 20 at Istanbul’s Yunus Emre Culture Center; revenue from the exhibition will be donated to an aid association.
Bringing people with MPS together
Nalan Çetin said a MPS Association was formed in May 2010 to bring together people with MPS, as well as similar diseases, along with their loved ones. The group’s next event is scheduled for this Saturday in the Adana.
Çetin, who is the chair of the association, said her son had been fighting the same disease for 16 years.
“We estimate that the number of patients with MPS is 1,000 in Turkey. We have families who don’t know about the disease and its treatment. We even have families with three members with MPS,” she said.
Because MPS is so rare, so few specialists in Turkey are familiar with the disease, Çetin said.
What is MPS?
Mucopolysaccharidosis, or MPS, is a progressive condition that mainly affects the skeleton. The rate at which symptoms worsen varies among affected individuals.
The first signs and symptoms of MPS Type 4 usually become apparent during early childhood. Affected individuals develop various skeletal abnormalities, including short stature, knock knees, and abnormalities in the ribs, chest, spine, hips and wrists.
The life expectancy of individuals with MPS 4 depends on the severity of symptoms. Severely affected individuals may survive only until late childhood or adolescence. Those with milder forms of the disorder usually live into adulthood, although their life expectancy may be reduced. Spinal cord compression and airway obstruction are the major causes of death in people with MPS 4.