I think the Doctors should do a show on people with NF. Particularly the diferent effects and how many family members have NF. My mother has NF, both my sisters and myself have NF. Two of my boys were diagnosed at birth, with NF and the other two boys technically do not have NF, but do to the strong family history and the fact that more cafe-au-lait spots and or neurofibromas can appear anytime (usually when hormonal changes occur, i.e. puberty or pregnancy). My youngest is the only boy to have a tumor debulked, he had a plexi-form neuroma in his lower back, involving his bladder and rectum. I have had 21 brain surgeries, my ypunget sister two and my youngest sister 5. All of us have hydrocephally.
We belong to our local support group, and have a walk every May to raise money and awareness for NF. May is national Neurofibromatosis Awareness Month. Dawn
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I would love it if The Doctors did a show on NF. I had two tumors that grew rapidly and to massive size that had to be removed by emergancy surgery. This happened in less than two years time. I had doctors from three different clinics at the University of Michigan Hospital tell me that they had never seen anything like what I had before. They had never heard of what happened to me (tumors growing to soccerball size in 13 hours) happen to anyone else, let alone I had it twice. I even went to the National Institute of Health and participated in a research study on NF and was told after my first surgery that they had only heard of something like my case once before. 22 months later when it happened again we contacted the NIH to give them an update on me and they had then heard of 4 more cases like mine, but I was the only one they knew of that it happened to twice.
I know that a lot of people could learn a lot about NF (even people that have it) if The Doctors did a show on it. Each case is so unique that they could get many different perspectives.
That's a good idea, maybe talk about the differences between type 1 and type 2 (I have type 2) and what makes them different besides the symtoms (genetics, cafe au lait spots vs. no cafe au lait spots, vision impairment vs. hearing impairment, etc.). I've discovered many doctors I've done to get NF1 confused with NF2 and told I couldn't possibly have NF since I didn't have cafe au lait spots, but that is more of a symptom of type 1, it's not as common with type 2.
It would be nice to see something that I can relate with being talked about on the show. I agree with erin when it comes to dicussing the differences between the two. I'm the only one in my family to have NF and for me its not always easy. I've found a site online that I can go to where there are others that have it though and when I feel the need to talk I just go there and say whats on my mind. But to get it out like this is what even those of us on there have been wanting for a very long time.
YES, please, please, please do a show about NF - I myself have had a benign brain tumor removed, a tumor that my sciatic nerve is going through over 200 "bumps". My 14 y/o son Sam passed away from an NF related tumor 9x12 MPNST.....
I have NF1 and live in a vety small town. The drs around here look at me like im talking German when I tell them. I would love to see a show about it and talk about you the differences in each person. Im real lucky I guess, Ive had one tumor on my third toe when I was 7 and thats it. I have had alot of cysts but no major surgerys. How has the diease affected your teeth? I brush at least twice a day and they stil fall apart. Is there a common bond between the two? I have finally found a dr whois helping me find the right dr. toget me checked up on but the wait is long. Just glad I guess that I have found some people who know what it is and what its about and dont look at you like your gonna get them sick!!
I have NF1 and live in a vety small town. The drs around here look at me like im talking German when I tell them. I would love to see a show about it and talk about you the differences in each person. Im real lucky I guess, Ive had one tumor on my third toe when I was 7 and thats it. I have had alot of cysts but no major surgerys. How has the diease affected your teeth? I brush at least twice a day and they stil fall apart. Is there a common bond between the two? I have finally found a dr whois helping me find the right dr. toget me checked up on but the wait is long. Just glad I guess that I have found some people who know what it is and what its about and dont look at you like your gonna get them sick!!
I also think the doctors should do a show on NF. Myself and my two sons have NF1, and in April 2009 my son had surgery to remove a tumor that was wrapped around his brain stem and spinal cord, until this we didn't really know how srevere this NF could be. The hole family was concerned, and people should be more aware of what this is and what it could do to a person.
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