|
|
I was not diagnosed with neurofibromatosis until I was 12 years of age when my parents took me to some well-known plastic surgeons in Salt Lake. They told my parents and I that I had NF. We were referred to a neurosurgeon at the University of Utah who made the official diagnosis of Neurofibromatosis Type 1. I have had 24 major surgeries all of which are directly or indirectly related to my neurofibromatosis. My most recent surgery was in May of 2010. A large Neurofibroma had grown on the spinal cord and broke the disc in pieces. They could not remove the Neurofibroma or I would have lost my ability to move my feet and walk; so the cleaned out the bone fragments and and then fused the spinal cord back together with 2 rods on each side of the spianl cord going in towards the middle of the spine. It has been a very long recovery period; which I am still undergoing. My entire body is covered with neurofibromas internally and externally. My spinal cord has tumors growing from top to bottom on both sides. I also have a plexiform in my right forearm, a neurofibroma in both lower legs, one on the base of my brain and many others a numerous places internally. I have had 6 surgeries on my right forearm, the 6 eye surgeries, a plexiform removed from my right thigh, my chest cavity, my lumbar spine, and a heart aneurysm. The other 7 surgeries were indirectly related to my neurofibromatosis. I have also had to have several dermal neurofibromas removed because they have rubbed against my clothes and have begun to tear and so I had them removed. As a result of the 6 surgeries on my arm I have lost most of the feeling in my forearm and my right hand. I have a hard time feeling with my fingers. As a result I have a hard time holding on to things so I have taught myself to write left handed instead of right handed. I also eat using my left hand, brush my teeth with my left hand, etc. Because there is a chance that I could loose my hand or arm at some point I have been through rehab and learned to do everything that you would do with two hands, such as tying your shoes, with one hand. I have also lost all of the feeling in the upper part of my right leg and the feeling in the lower right leg comes and goes. I use a cane or a walker to get around because I never know when the feeling in my lower right leg might give out. But I just keep counting my blessings every day and am grateful for what I can do to help others around me, especially those who are living with NF. It has been a challenge to live with NF. It is hard because you never know what will happen next. Since last year new tumors have developed and some are growing larger. Many youth I have met at the NF Summer Camp held in Utah have asked me how I handled living with NF all of these years. I told them that I have decided the best way to deal with it is to take it a day at a time. This is easier then dealing with all of the things that may not ever happen to you. I also try to not let it stop me from doing the things I want to do. For example; in 2009 I attended the NF Forum in Washington D.C.. While there we had an NF Walk as a group from our hotel to the White House. I went; using my cane in my left hand for support and pulling a portable oxygen machine behind me wifh my right hand. When I got back to the hotel I felt a great sense of accomplishment. I would not have missed it for the world. I do all I can to bring awareness to NF which is something that is so important to do. I am very committed to helping others who also suffer from this challenging disease. I consider myself to be blessed for having this disease because it allows me to come in contact with so many courageous people who are fighting the same battle. My goal is to keep going and do all that I can to help find a treatment and a cure for NF. Many have called me "The Energizer Bunny" because I keep going despite all of the health challenges that I face. I am joining the race for a cure and would appreciate all the help that you can give to this important cause. With all of us and my deceased loved one who is my guardian angel and loved dragonflies and passed one on to me when she died that she had found walking home one night on the pavement; we can soar to new heights and be free as a Dragonfly from NF. Please open your hearts and help me with this important cause that is dear to my heart. Love, Lynne |
My name is Lynne Stockman from Salt Lake City, Utah and I am 49 years old and was born with NF1. I am the only member of my family who has neurofibromatosis. I am currently serving as the Utah CTF Chapter President. I had trouble with my vision and began wearing glasses when I was 18 months old. When I was 3 years old I had surgery to remove a mass from my right forearm. The pathology report came back indicating that it was a “bag of worms” of an unknown source. It was not identified as a Plexiform Neurofibroma.
