Doctors hardly ever want to help.
Written by manuela, published 5 days ago.
Hello, I am from Spain, and I was diagnosed with the disease when I was born, when I went to the bathroom, and after several month when I got black earwax in my ears.
There are 7 children in my family and only 3 of us are suffering from this disease. I am the oldest, at present I am 41 years old, and I believe that I have lived all my life with problems, especially since I turned 25 years old, and I had my first child.
After that, at the age of 35, I had my second child, and everything started to change. I started having a lot of back pain, especially on my lumbar vertebrae, my knees, my ankles, my wrists, etc.
Everyday I get up feeling a different pain (some doctors say that it could be fibromyalgia). After that, my rheumatologist sent me to have many tests performed, xray exams, gamma tests, magnetic resonance, ct scans, etc., and then sent me to an internal medicine doctor who was the first to speak about this disease.
He has two more patients suffering from it. He always tells me that I should get some physical exercise, and put heat on the area, and when I am suffering from an arthritis pain he orders corticosteroids. A little while ago he mentioned a new treatment to me. It is called Orfadin (Nitisinone), but I believe it is worse than the disease, due to the side effects it causes.
Well, kind regards and patience.
Written by manuela, published 5 days ago.
