|
|
|
 | ||
|
Recent responses to the Understanding NF1 Web site.
Share your own comments Page: 1 September 3, 2002 Thank You Thank you. Thank you for your work and for giving us more information to help our children. I have a 12-year-old son with NF1 and I am constantly looking for new information to help him and to help his teachers understand what he is dealing with. Finally (in the last couple of years) more information is becoming available and ideas on how to help these kids cope. Your information stands out. So thank you for your site. Arlene Smith Beverly Hills, CA October 25, 2002 Research Assistance I am an adult with NF1 who wasn't diagnosed until 30 years old!! Had I known about this situation earlier, maybe I would have had my life go in different/better direction -- Possibly even looking at early retirement options. Will there be anything about adults, like myself, who have been 'THROWN AWAY' by society due to misdiagnosis of NF!? If not, I would like to offer my research into the subject and my 'BEEN THERE -- DONE THAT' experience. Reggie Nierman Boston, MA Dear Reggie, Thanks for your offer of insight and experiences into the adult experience in delaing with NF1. There are many patients who were misdiagnosed as children and would have adapted better had they been made aware of the treatment options. Someone on our staff will contact you shortly to set up an interview. Sincerely, Harvard Genetics (?) Page: 1 Share your own comments
|
|
| |
