Time to Think Of A Better Approach

I am an outgoing person and I talk to strangers on a regular basis. Today I was at Starbucks drinking coffee and working on a few projects. I noticed that a Dr. from a local hospital walked in and I started a casual conversation with him. My intent was to raise a little awareness about Neurofibromatosis. Apparently him being a heart surgeon at a local hospital doesn’t give him much exposure to NF patients, even though NF patients regularly experience cardiac problems. I was surprised at his rude attitude. I didn’t want to take up too much of his time. I guess you have to be brave and willing to take chances when starting conversations with strangers. This business of being open and outgoing about medical conditions you have with the public isn’t as easy as I thought it’d be.

Tomorrow is a new day. . .

I think it’s time to consider a better approach to take with the public in general when discussing Neurofibromatosis.  I’m not selling anything, asking for money, or trying to proselytize.  I am merely attempting to create public awareness about a health condition that effects 1 in 2500 individuals.

 I welcome any thought or suggestion you might have on how you've discussed Neurofibromatosis with the people you run into. 

You May Have NF... But Don't Let it Define You

I spend a lot of time thinking about how I wish things were. But once reality sets in, I realize that it's better to live in the present than be stuck someplace else. Don't get me wrong, I think it's great to hope for change or for things to be different, though if we stay there too it is possible to become ineffective and get very little done.

I have a Neurofibromatosis, a genetic condition that affects 1 in 2500 individuals worldwide. Some individuals inherit from one of their parents; others like me get it as a result of a spontaneous mutation. It affects each individual differently... some I've talked to had very few signs and symptoms... others have developed cancer and died from it. This is reality. It is a scary place to stay in. But if we accept the cards we've been given, learn to live with our condition and spend time doing our best then I think it will likely lead to the best possible outcome.

Sometimes I try to remain strong and avoid complaining so that I don't burden others with my problems. I know every person with or without NF has their own share of hardships in life. But it seems the harder I try to ignore the pain I at times feel inside, the harder I fall once it hits me.

I have found that all I can do is the best that I can do. I shouldn't try to be someone I'm not or feel compelled to compete with my siblings, cousins, or friends. I'm not them. I am me. Also, I have decided that I will not let NF define who I am. I have no problem talking about my life, medical condition, or how it's affected me... but I want people to know me for me... not NF.

I am a Christian. I find strength in knowing that I am a child of God, and I am passionate about my faith in Christ.  I enjoy spending time helping others and investing in their lives-- it helps me take my mind off myself and forget about my problems for awhile.

To conclude, I am hopeful that I can make connections with others with NF and find ways to encourage them and help them be more confident about sharing their story with others. A story with a face... will make NF more than just a difficult medical term to pronounce. If people begin to see a face and hear about how this condition affects them and others, and how common it is... then I believe that this condition will begin to be something that the public is more aware of. Remember... you might have Neurofibromatosis (NF) but you are more than NF. Try to find things you love to do, find ways to help others, because I believe this is the best way to cope with a condition like this.

NF Speaks

Hello,

I am working on creating an environment that supports existing non-profits that provide care for those afflicted with Neurofibromatosis. My goal isn't to duplicate but to help fill in the missing pieces. I will likely redirect people to their respective NF chapter who can provide better one-on-one support... but my goal is to have a more central or collaborative system of organizing peoples stories, creating a team of people who's chief mission/goal is to educate the public, mainly the media on the condition. The most important element above all is that those affected by the condition have access to accurate information from trusted sources. I hope that I can assist in pointing people into that direction and will make a commitment to cited and documenting any and all sources whenever possible.

Thank you for your time and understanding!
Jonathan