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How I found out I had Neurofibromatosis
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I am 25 years old and at 17 I received life changing news. I’ve had really bad pain since puberty. It all started in 2010 when I woke up with pain in my abdomen which seemed like the pain I normally have, but it got worse so I had to go to the ER. It took them hours to figure out what was wrong. Eventually they found out it was my appendix and when I went into surgery they got an answer to why my appendix was hard to find l. The surgery took longer than it was supposed to because they found a softball sized benign tumor attached to the muscle wall which was pushing my appendix out of the way. After that surgery it got the ball rolling and several tests later I was diagnosed with Neurofibromatosis 1. In my case It was a genetic mutation that happened at conception. They found hundreds of benign tumors all throughout my body. I don’t know the official count because they stopped counting at 500. I have two brain tumors in my thalamus, a cluster of tumors wrapped around my lower spine and the rest are every where else. Because of the tumors putting pressure on my nerves I am in pain 24/7. On a good day I am a 6. What truly help keep me distracted from the pain is art and music. Last year after several ocular migraines I grew a black spot on my right eye that’s most likely permanent. I have a surgery coming up on February 14th. The surgery hopefully will help regulate my pain.

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5 years ago