Healthcare for CHIARI patients
Trying to come up with a plan to help all with the neurological disorder that needs more awareness and many do NOT have insurance. Surgery is an option that comes more often than not and many can't even afford the consult. WE NEED HELP!!!!
I am writing to you in hopes of discussing a plan to help all patients with CHIARI MALFORMATION in NJ who DO NOT have insurance. CHIARI is a neurological disorder that not only causes many physical and mental symptoms, but it is also a financial nightmare. I have been through 2 brain surgeries so far and I was fortunate enough to have coverage. To this day I am at the doctors office every other month, an MRI every 6 months, meds, etc. I don't know how I could do it without insurance. I know too many friends without insurance that need help. The problem is many of us can not work due to our situations and unless you have a family or spouses insurance--you are left out. We are a very dedicated state to helping all with CHIARI. NJ has raised a lot of money to help with research, but we need help to get to the doctors. I know of many children who are forced to hold fundraisers and rely on the local community to help when the government could do the same thing. I have been this way for 10+ years even though I was born with it. I have had enough of children suffering and not being able to get help because they have no insurance.
This will take some time and planning, but it can be done. I hope this petition along with the other states petitons can open up the door for discussion??
I know that healthcare is an issue for all and this is about saving someone's life. Many say CHIARI is not fatal, but i know of 8 people in the past 2 years that have passed away due to mis diagnosis, infections, strokes, bad surgery, etc
WE NEED HELP!!.
Thank you, Brian Muphy
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