2024-04-09 15:27:22
For months it was unclear what was wrong with her. Now Green Party politician Ekin Deligöz has certainty. She made her diagnosis public in an interview.
The Green Party politician Ekin Deligöz spoke publicly about her illness – and criticized the health system. The Parliamentary State Secretary in the Family Ministry told the “Tagesspiegel” that she suffers from the very rare autoimmune disease polymyositis. Fewer than 500 people worldwide suffered from the disease.
Polymyositis is often accompanied by a feeling of muscle weakness, symptoms of inflammation and difficulty swallowing. The body produces too many immune cells. In Deligoz’s case, the illness occurred as a result of pneumonia following a corona infection. “This means that the transverse muscles in my lungs can become inflamed at any time.”
“My lungs are currently only performing at 70 percent,” said Ekin Deligöz in the “Tagesspiegel”. “The doctors say it could take between two and three years for it to regenerate.”
“I was made to believe that it was my own fault”
This shouldn’t have happened, says the politician. She was “treated for everything possible” in her family doctor’s office, but nothing helped. “It was made clear to me that it was my own fault that my illness had not improved. This made health a private matter. Even when I was acutely short of breath, they referred me to the afternoon consultation.”
It was only in the hospital that she received real help. There she was dependent on an external oxygen supply for two weeks.
Today her lungs are functional to a limited extent. “I have to gasp for air every now and then. This limits my ability to move and every staircase becomes a challenge.” She continued: “I’m only 52. I want to be fully productive again. I would really like to finally spend an unburdened, nice evening with friends again.”
Health sector “under the radar”
She wanted to draw attention to the situation of women who live with unclear medical diagnoses. “Many women experience medical stories similar to mine. In their private lives and in the ministry, people came to me and suddenly everyone was talking about their illnesses. But people don’t really like to talk about them.”
Deligöz often felt that she was not taken seriously and says that this could also have been due to her migration background. “It’s just attributed to me and I’m not given a chance.” People who experience discrimination at work could take legal action. “But what’s happening in the health sector is much more under the radar.”