Turkish mother seeks state support for daughters suffering from MPS

Turkish mother seeks state support for daughters suffering from MPS

Turkish mother seeks state support for daughters suffering from MPS

A woman whose two daughters are suffering from MPS has complained that Turkey’s social security only covers one of her daughters’ medications, Doğan News Agency reported on Dec. 11.

“My younger daughter is suffering in front of my eyes. Her situation is getting worse. She’s in pain. Breathing becomes difficult. Perhaps if she took the medication, we could stop the disorder from worsening,” Döne Akbulut, the mother of two children suffering from MPS, has said.

Mucopolysaccharidosis, widely known as MPS, is a rare genetic disorder caused by the absence of enzymes and can affect many body systems, including damaging organs.

The two sisters do not have access to the same treatment, because of a difference in their health conditions. One can walk, while the other cannot, Akbulut said.

“My elder daughter can get the medication but my younger daughter cannot because there is restriction by the state. Patients who walk can receive medication but the ones who are unable to walk cannot. That’s why my younger daughter isn’t receiving medication,” the mother said.

While Esma Nur, 12, receives weekly treatments, each for four hours, at the Aegean University Hospital in Manisa, Feyza Nur, nine, is not provided the same opportunity.

“To receive this medicine, the child has to walk for six minutes. Doctors watch them walk for six minutes, and then we head to the committee. We can get the medication upon a doctor’s prescription,” Akbulut said.

“While one of my daughters is getting better, the other one’s health is deteriorating,” the mother said.

“It’s a genetic disorder. Walking, breathing and hearing get harder with age. The medication doesn’t treat the disorder but it helps stop it from worsening,” Akbulut added.

“The MPS’ medications import to Turkey began in 2015 and was covered by social security, so we were very happy, however, after some time we faced restrictions,” the mother said, calling on authorities to help solve the situation which, according to her, could kill Feyza Nur at an early age.

Feyza Nur often asks why she cannot walk and dreams of being able to walk one day, her mother said. “She says she would not enter the house if she can walk one day,” Akbulut added. The nine-year-old nowadays goes swimming to help strengthen her muscles.