The story of Claudia-Agnès
I have neurofibromatosis type 1 which is a rare hereditary disease where patients can be spontaneous mutations. In my case I am a spontaneous mutation. Each case of neurofibromatosis is unique, as is its carrier. I have café au lait spots all over my body which are one of the distinctive signs of the disease. I also have neurofibromas which are non-cancerous tumours that grow along the nerve endings. For the past two years the doctors have discovered that I have a neurofibroma on my cervical vertebrae and another on a nerve that runs close to the lung apex. My life has become a hell of a lot of pain, my body is getting used to the drugs, and the pain is radiating into my arms. Living every day is more of a struggle, you have to keep your head up and tell yourself it can’t get any worse. Wrong… there are days when it is impossible for me to leave my bed. People with NF are warriors on a daily basis because they endure so much on a daily basis and they still have to face the gaze of others and even worse their family members who don’t understand anything and say you’re faking it, you’re faking it, it’s impossible to have so many problems, you don’t even look sick.