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We consider ourselves pretty educated people but we had never heard of neurofibromatosis.
And you know, we were told don't go to the internet, don't really look, of course we
did, and it's pretty scary what's out there. So, you know we were looking at our five year
old little boy at this point and picturing his life and what all the possible ramifications
could have been.
Parents when they learn about the diagnosis have usually never heard of it before and have absolutely no idea what to expect. In the last 20 or so years
there has been an increasingly active sort of network of neurofibromatosis specialty clinics.
Which offer a kind of center for diagnosis, counseling, and management. And when patients
find their way to programs like that it can be like sort of a ray of light into the darkness.
Because for the first time they will meet physicians and other health providers who
have seen lots of people with NF can benefit from that experience and provide counseling
and management which may be otherwise very hard for patients to get in the general community.
We feel really confident in the care that we are receiving at the genetic clinic because
they are an NF clinic. One of the nationally endorsed ones with the Children's Tumor Foundation
There is a lot of confidence and peace for us and our family knowing that the experts
really are right here in Birmingham where we are. If you are on a support group page
and you mention or have seen Doctor Korf, light bulbs go off and say oh my gosh, how wonderful.
We saw him at a forum, we saw him at specialist, we traveled to Birmingham to see him. You are
in great hands. And moving forward is developmental milestones, come a part of dealing with neurofibromatosis
and there is other concerns that we need to watch for, we just can't say enough about the peace
that gives us to know that we are in the right hands here at UAB with Doctor Korf and the
clinic. I have been following neurofibromatosis patients for 30 years. I see people now who sometimes
I have been following since they were children. I get occasional emails from people that I
haven't seen in 30 years almost. I think what motivates me is the relationships that
you form with people with NF and the hope that in my career lifetime we will have treatments
that can really make a difference. The one thing you can know for sure is that it's never
dull, things that have made people wonder for millenia are now becoming clear. We are watching
the mysteries of human physiology, health and disease.