Neurofibromatosis Resources

Carrie's Story:

Sent: October 10, 1999
 

Hi! I am a 28-year-old female who was diagnosed of NF1 at age 12. I got NF from a genetic mutation. No one else in my family has this. I have a mild case of it, several cafe-au-lait spots, axially freckling, and lische nodules. I just had a MRI done, and they found an astrocytoma. I am not sure how long it has been there. I saw a neurosurgeon and he seems pretty confident that it is not cancer and that it has always been there. I am going to have another MRI done in January to see if it has grown. This news came as quite a shock to me, as you can imagine. I had the test done just to make sure I was ok to have children. Now, I am told that by becoming pregnant the tumor could grow. So we will probably adopt a child. This is a tough thing for me, as I have always wanted to have babies. My heart breaks every time I see a baby. Lately, it seems everywhere I go there are babies all around. But, I am a very lucky lady, to have such a mild case.  This tumor has scared me a little, but with God in my life, I can handle anything. I just came to know God back in April. I believe that I was meant to let him into my life, before I found out about the tumor. People tell me they can't believe how strong I am, I am not, it is God. No matter what happens to me, I know God has a plan. I hope that my story can inspire others.
 
 

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Carrie / Added April 2000