Children's Tumor Foundation

Podcast: Living with Neurofibromatosis

Host: Jacquie Rogers
Guests: Mercedes Christesen, Stony Fletcher, Kristi Hopkins

Heroes Fighting Neurofibromatosis

These are all people who have NF and who are very proactive in the fight for a cure.

Mercedes Christesen

I wasn't diagnosed with NF1 until I was 19 years old. Before that, the doctors told my parents "not to worry" about the bumps on my tummy, that they were "minor fatty tumors" and would go away. I went through some painful times because my parents and teachers didn't understand why I couldn't learn to write legibly and failed miserably at any written tests, yet aced all oral presentations and exams. Proper diagnosis would have saved us all considerable heartache. (Mom says: Despite all that, Mercedes is the sunshine of many people's lives, especially mine, and always has a can-do attitude.) I have a full-time job, am mother to two daughters (both also have NF1), president of the parents' group at their local charter school, and publicist for my mother, author Jacquie Rogers. Neurofibromatosis is a genetic disorder. I'm one of the 30% who have spontaneous genetic mutation, meaning there is no family history of NF. My children, however, had a 50% chance of inheriting NF, as do their future children. I'm determined to do all I can for my daughters and all children born with NF. NF can strike any family. Mercedes on Myspace *** Email Mercedes

Jerry Willman

My name is Jerry Willman. I am a 43-year-old Cherokee Indian from NE Oklahoma. I learned I had NF when I was 18 and the disease was still called "Elephant Mans' Disease." Through the years since, I have lived with the pain caused by those who stared at my "lumps and bumps." As anyone with NF knows, those looks are very painful. We did not ask for this disease. Adults, children, and the morbidly curious, that once made me self-conscious, now have my sympathy. The pain, both physical and emotional, caused by NF has had a daily impact on my life, but I have always tried to live my life to its fullest. I worked with the public for over 16 years and during that time I tried to educate others about NF. Not just the curious, but others with NF. More than once I have had to provide my doctors with information. Finding good medical care was difficult for a number of years, but thanks to better education in medical schools, more and more physicians are aware of us and our disease. Due to physical limitations caused by my NF, I had to retire at an early age. I am now on disability but am in no way restricted from having a good life. I use the Internet for continued learning about NF, reaching out to and educating others and raising awareness about this painful disease. Jerry on Myspace *** Email Jerry

Jen Walsh

Jen Walsh is currently working on her Master of Artss in English, so will write her bio as soon as she's finished with classes. Here are a few words from her myspace page: I have Neurofibromatosis, also known as NF. I have NF1. My father and brother also have NF1. I have raised money for the Friends Ride for NF bike ride fundraiser in September of the last 2 years. Jen on Myspace ***

Scott Chester

I have neurofibromatosis and I'm the only person on both my mom and dad's family with it. This is a cruel disease, so much so I wish it was changed to being called a disorder or medical condition. When you tell people you have a disease they back away and don’t want to get near you. NF cannot be contracted by shaking hands, hugging, kissing etc.. People tend to shun us with NF. I had a boss go behind my back and tell my co-workers I was a drug addict. The tumors on my face are small and reddish tint. Instead of coming to me and asking what caused them, I was now known throughout the small town as a junkie. I also have an aunt that to this day still thinks my mom is lying to her about my medical condition. People fear what they don't understand, I hope my story helps with understanding what us with NF go through. We're just like everyone else and new people are being diagnosed with NF everyday. One day you, a loved one, coworker neighbor or family member could be told they have it. I hope my story helps you understand what life is like for me and others with NF. I was diagnosed with NF when I was 12. It was in the summer. While most kids that age are enjoying the sunshine, going to camp, making new friends, etc., I realized I would always be different from others. I didn’t know anyone else with NF so I had no one other than family to talk to. While they were there to comfort me I still had no one going through what I was dealing with. It wasn't until I moved to Seattle when I was in the 9th grade and started a new school I made friends with a kid that had just moved there and as it turned out he also has NF but neither of us knew each other had it until I was hospitalized (from another medical complication). As it turned out his mom was my family doctor's nurse. He was the only other person with NF I knew now. After graduation in '91 we gradually lost contact, so now I was back to square one not having anyone to talk to about NF. As time goes on NF progresses and some tumors get larger and more noticeable. People tend to look differently at me and others with it. Employers don’t want to hire a person with bumps on their face. If they do hire you get stuck in the back stock room or made to work graveyard shifts. Relationships are difficult as well. I was in what I thought was a great new relationship after moving back to a small town in my home state. As it turns out this woman was friends with my cousin's wife. The woman I was dating asked my cousin's wife what the bumps on my face were. My cousin tells his wife to say I have a disease. Needless to say she stopped going out with me in fear of catching something. About 6 months later I get a call from her and I explained my cousin and I never talked about what I have and he's ignorant about NF. Thanks to the internet I have made many wonderful friends with NF or with people that have family and friends with it. So if you’re reading this, I appreciate the fact you want to learn more. Scott on Myspace

Check back in a few weeks for
More Inspiring People with NF

Meet awesome folks who are helping to find a cure for NF!
New pages coming in the next few days.

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