NF HERO: LYNNE STOCKMAN

"My name is Lynne Stockman from Salt Lake City, Utah and I am 46 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. I had 3 surgeries on each eye to correct vision problems. 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.

I was not diagnosed with neurofibromatosis until I was 12 years of age. My parents took me to some well-known plastic surgeons in Salt Lake to see if they could do anything to help with the scaring and disfigurement of my arm from the surgery. They told my parents and I that I had NF which at that time they also said was the same thing as Elephant Man’s Disease and showed us pictures of Joseph Merrick. We were referred to a neurosurgeon at the University of Utah who made the official diagnosis of Neurofibromatosis Type 1. It was not until later that they found that NF and Elephant Man’s Disease were not the same thing.

I have had 23 major surgeries all of which are directly or indirectly related to my neurofibromatosis. 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 aneurism. 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. 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 have decided that for me it has been easier to tell people that I have NF so that they don’t have to wonder about it. This also helps 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."

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