Being born with a genetic disorder can have its pros and cons. When I was three weeks old my mom took me to a doctor where they determined that I had Neurofibromatosis. Generally, it is hereditary but I am the only one in my family with this condition. There are two types of this disorder and I have type one. It is called NF1 for short. This disorder affects the nervous system and can cause tumors to grow anywhere on the body. I also have scoliosis, café-au-lait spots on different areas of my body and a few in my eyes but thankfully it has never affected my vision. When I was 12 I had to have surgery to correct my “knocked knees” as well. I am actually very fortunate to have a mild case of NF1. I can remember growing up and going to my geneticist every year for check ups and seeing kids my age with this and a lot of them were confined to wheel chairs or their tumors took over their entire face. I am very fortunate that I only have a few small tumors on my face, belly and back. Most of them are under the skin so you can’t feel them but you can see them. Having this condition has taught me to be grateful for all that I have and not take things for granted.
Your post was very interesting. I had never heard of NF1 before. What you said at the end made me think about how I take my health for granted sometimes and do things (like smoking) that harms it instead of being grateful and trying to preserve my health.
ReplyDeleteL. Nicole Holloway
you certainly make people stop and think about what they are doing to there health if they are watching there health or not.
ReplyDeletevery interesting
Quite an interesting read. I have never heard of this disease. I had to google café-au-lait spots as I had never heard of this term.
ReplyDeleteTerry M. Johnson
Your blog really made me think about how much I take my health for granted. I like how you see yourself as fortunate person with this. I was not aware of this genetic disorder so I am glad you shed some light on it for me.
ReplyDeleteMelissa Ellerbe
I had never heard of this disease until now. You are an inspiration to people and how we should appreciate what we are born with and how we tend to live with it. I hope that everything in your life turns out the way that you want it to turn out like.
ReplyDeleteTony Miliziano
My sister works in a lab that is works to find cures for hereditary diseases, including NF and CF. I'm hoping that they'll succeed. I'm glad to hear that you are on the lighter end of NF1. I cannot imagine what it must be like, and like Tony said, you are an inspiration.
ReplyDeleteI am very grateful for your blog and to reveal something so personal. I think from your blog we were all very informed on a disease that we probably wouldn't have known about unless we were personally affected by it. I admire your bravery and informative blog.
ReplyDeleteMahogany
I appreciate the positive feedback. I know that NF is a pretty unknown disease so I'm glad that I could tell y'all about it. I'm looking forward to the day when there is a cure for this.
ReplyDeleteLinnzi Wimberley
It is amzing that I work in a hospital and have never heard about this disease, everyday you learn something new and experience something different
ReplyDeleteThanks you for sharing
Monique P
I too have never heard of this disease until now. I can only imagine what it is like to deal with the things you do in life. Your blog was very inspirational because even though you were born with NH1, you still expressed how grateful you were that it was a lighter NH1. It motivates me to want to be more grateful about my health and not take as much advantage of it has I already do. This was a great blog to read and keep strong. :)
ReplyDelete