I Have a Rare DiseaseSurgery done, Thursday. No complications. I only have a headache in the area where they put the shunt in, a headache that especially pops up when I sneeze or cough. I may go home tomorrow.
I Have a Rare DiseaseI found out on Thursday that I have high brain pressure (too much liquids in the brain and around the spinal cord) which has given me bilateral papilloedema, a pressure on the optic nerve(s) which affects my vision. I'm in the hospital right now...See More »
I Have a Rare DiseaseToday I met with a few other patients and their family. It was great to exchange experiences and the location was perfect for a group meeting. We met at an all inclusive indoor and outdoor activity park. After the entrance fee, everything else was...See More »
I Have a Rare DiseaseThere are about 200 known patients alive world wide and I'm lucky to have been born in the country that leads the scientific research of the disease. In fact the combination of symptoms was first described based on the history of my family. The...See More »