I’m writing this because this is something I care about deeply and change won’t happen without the support of people like you. Starting this petition has been in the works for years. I am moved to do so because IIH has personally and severely impacted my life, health, family structure and my entire community of #PseudoSisters. The definition of this "invisible illness" doesn't fit most of us, is it genetic, will we pass it to our children , why are women the mass majority diagnosed and it can mimic multiple sclerosis and cancer. #ICareBecauseImRare.
We know we're not alone and together we can make this change happen. Please sign and share! https://chng.it/THtb4bVCHZhave I have IIH a very deadly & rare brain tumor diagnosis, a TBI it’s called #Idiopathicintracranialhypertension, or #IIH. I’m in an exclusive club I never wanted to join. We call each other #PseudoSisters. The seizures are awful & never forewarning. These “headaches” are actually severe positional migraines. If it flares today, I will quite literally be deaf, dumb and blind until, and hopefully my last ditch life-saving prescription will come through again. I’ve now had 8 unsuccessful and unnecessary brain surgeries, over 12 spinal taps, optic sheath fenestration (cutting behind the eyeball to create ‘blinds’ like in our windows) to find another place to allow the trapped spinal fluid to leave through & to try & alleviate the CSF that is flooding my brain, causing such unexplainable pain. Most importantly though trying to keep my vision and hearing intact for as long as I can. #IIH can be a death sentence for some individuals and/or our lives will be cut short. I’ve lost about 50% of the left ear & eye in the last 8 years. I have IIH, PTC-Pseudotumor cerebri & chiari malformation- #PTC is almost a mirror of #IIH but my #chiarimalformation went undiagnosed and caused a TBI and brain infection due to Neuro surgical mistakes! These are all in direct correlation to be diagnosed with IIH. Once this combination happens besides the prescription medication for the Cerebral spinal fluid, seizures, clots etc some of us have no more options for a treatment.