nf1 with no health care
im 24 and have been diagnosed with nf1 since i was around toddler age. for the first couple decades of my life my mother (who also had nf1) never really educated me on it. around the time she died (at 50) i started truly educating myself on it and all i can say is im terrified. growing up i thought all that was wrong with me was cafe au lait spots all over my body. as of now i have a few small bumps in various spots (my neck, back, wrist, and butt) but theyre not noticeable at all to other ppl and i havent experienced any pain with them. I also have pretty bad scoliosis. anyways one of my cousins who has it is now on chemo for a brain tumor. i know that part of having nf1 is doing preventative testing and making sure there are no internal tumors especially on the brain. the last mri i had i was about 18 so its been a while. when i was 22 i had my medicaid taken away because they claimed i “make too much money “ but after all my bills i have nothing leftover for health insurance premiums and co pays :/ i feel so stuck and hopeless. the fact that i could have a life threatening tumor and have no idea because i just simply cant afford testing keeps me up at night. and even if i did want to try and cram a health insurance bill into my monthly expenses i would have to wait until enrollment period. i dont even know what to do anymore, most days i genuinely wish i was never born. anyways are there ANY resources for me? i tried to sign up for several studies but they all said i live too far. (i live in in southwest Michigan extremely close to the indiana border)