Walk for a cure
Organized by: Christina Bentham
I'm 33 years old and back when I was 5 I was diagnosed with a tumor condition called Neurofibromatosis. May is the month for awareness. Neurofibromatosis is a genetic condition with a 50/50% chance to pass it on 1-3000 are born with this type alone and half of that is a mutation my dad and brother and nephew all share this with me my dad being a mutation. There is no cure or treatments at this time. Neurofibromatosis causes tumors to grow on the nerves of the body including brain and spinal nerves and the nerves behind the eye. Scoliosis and bone deformities can happen along with learning disabilities and host of other problems. The tumors that develop on our nerves can grow and cause chronic pain the tumors can be small and purple in color and grow on the top layer and under the skin. Tumors can also grow deep and on nerves in the body. These tumors have a chance of becoming cancer 10% chance but still scary. One of the very first sign of NF is light to dark brown spots on the skin and freckles in places the sun normally don't shine. Growing up I had difficulties in school learning I'm kinda short and clumsy. And I have scoliosis as well. I didn't have any tumors growing up but now I do I had one removed from my sciatic nerve two years ago I also have some in my right arm and now on my lower back. And it seems like the one on my sciatic nerve is back. I have many smaller ones through out my body. I now can't walk far and use a walker to get around at times. I'm in chronic pain all the time and don't sleep well because of it. I'm on nerve pills and pain meds daily and at times they don't do their job. At this time their is no cure and no treatment for this disorder. Doctors are doing as much as they can but its costly to run test after test to find treatments and cures for NF. There are three types of NF alone Type 1,type 2 and shwanommas each with their own different effects on the body and no two people are effected the same. In this year alone at least 10 have passed from a MNSPT a tumor turned into cancer and inoperable.