I Have a Rare Disease

I 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 since 10 am on Thursday, and will be sent to the academic hospital of Uppsala tomorrow according to my hospital journal, the doctor has yet to speak to me about the visit to Uppsala.

It started as a headache followed by puking and poor vision. I'm on meds now, and they tapped me on fluids through my spinal cord the first evening, so the horrible headache is gone and my vision is slowly coming back to hopefully normal.

According to the internet, there's 4/100 000 people in USA who have this desease, and here in Sweden there's no statistics of it. I'm rare! And hopefully I'll fully get my vision back.

GkB01 · 51-55, M

I was born with a similar rain condition in that it involves fluid around the brain causing pressure etc, Hydrocephalus. I hope you feel better soon and can make a full recovery.

mercedes810 · 31-35, F

@GkB01 sorry to hear, did you get well? They told me they may have to continue tapping fluid from my spinal cord if my head ache comes back... Thank you.

GkB01 · 51-55, M

@mercedes810 I had a couple of shunts put in to regulate the pressure over the first 12 or so years of life. One didn't work and the other had to be removed on account of an infection developing around it. I recovered well from a risky operation to take it out and although there are some legacy drawbacks like poor reactions and medically not being able to drive, I am in good health.