Lymphangioleiomyomatosis in Cyprus

Hello everybody. My name is Maria and I write my story about Lymphangioleiomyomatosis with Tuberous sclerosis. I discovered my disease on 26/4/2012.

Written by Pieridou39, published 6 months ago.

On 27/3/2012 I was working and I didn't feel very well. In the night when I went home I couldn't breath, I was having dyspnea. On 28/3/2012 it was my day off and I had the feeling to fall down. When my husband came home I told him to take me to the hospital. I did X-ray and they told me I have air in my lungs, I you have pneumothorax. They put me one machine on the right side to take out the air. I stayed in the hospital for 4 days. On 18/4/2012 another symptom started, this time on the left side. It was a very painful experience. At that time one doctor told to the other doctor to make me a CT of the chest to see what happened. He made it and the results were very bad. They told me I have a disease called lymphangioleiomyomatosis. I was crying because I stayed in the hospital from 18 April until 1/6/2012. They made me many exams and many CT scans and they found also angiomyolipoma in my Kidneys. On 18/6/2012 I had the operation Pleurodesis. After all this time, I started the treatment with Sirolimous but this treatment made me sick. They stopped it because it didn't help me. Last year I started another treatment with medicine Everolimus. In the beginning it was ok but on 15/1/2016 I went to hospital again because all my mouth was full of Herpes i didn't eat nothing before. It was a very very painful experience. They stopped the treatment again. The doctors here in Cyprus told me I can't go to the airplane. I need more information about the disease and I need help. Here in Cyprus the doctors don't help me a lot. I have 2 children and I don't give up.

Written by Pieridou39, published 6 months ago.

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