Support Jess's Battle with IIH

Hi, I’m Jess. Bright, sunshiney, positive Jess. The “happy one”, the person who has always been down for a good laugh and can have a conversation with people I have never even met before because life is short. My friends would say I am kind and silly and just kind of roll with the punches life gives me. Recently this has not been me at all.

I have recently been diagnosed with a rare brain disease called IIH or Idiopathic Inter-cranial Hypertension. What this means is my brain loves my spinal fluid. My spinal fluid builds up and causes me to lose vision and get very sick. I’ve missed work, missed out on life opportunities, fun with my family and wracked up all of the medical bills (over $4000 in 3 visits alone). One of five of my prescribed medications is almost $150 alone WITH insurance. With IIH there is no cure, there is no known cause. Most days are excruciating to get out of bed and the sunlight is unbearable as this puts large amounts of pressure on my optic nerves.

My old hobbies used to include spending time with friends and family and taking the children in my life to the park or to play and now if you call, I’m in bed.. not playing with the kids, not enjoying what I used to enjoy. I’m at risk of going blind and requiring brain surgery. I am the “suffer in silence” type and this is very much not like me to reach out for help. But this will be lifelong and I cannot do it without a support system and help. Anything is helpful.

JUST AN UPDATE: I have joined support groups and found a neuro-ophthalmologist in Chicago who has so much experience in IIH. Please continue to share and help if you can as Chicago is over 7 hours away and this will be costly. Thank you everyone for sharing and the kind words this far. ♥️