Neurofibromatosis neur-oh-fi-brah-mah-toe-siss is
a group of disorders that cause tumors to grow in
the nervous system.
One of those conditions .
'N-F two' .
causes many patients to go deaf because the tumors
grow on the nerves responsible for hearing
As Martie Salt shows us .
a drug already in use for some cancers is not only
halting the hearing loss .
but reversing it.
HEATHER SHEELEY-JOHNS CAN WALK ALONG A BUSY CITY STREET
FOR YEARS, CARS, HORNS AND SIRENS WERE IMPOSSIBLE
I think things were a little more muffled.
Having a very difficult time figuring out where the
sound was coming from.
HEATHER WAS DIAGNOSED
WITH NEUROFIBROMATOSIS NEUR-oh-fi-brah-mah-TOE-siss
TWO IN HER LATE TWENTIES.
TUMORS ON ONE CRANIAL NERVE CAUSED HER HEARING TO
GET PROGRESSIVELY WORSE.
Losing hearing at that age can be very traumatic and
DOCTOR JAISHRI JAY-shree BLAKELEY IS AN EXPERT IN
TUMORS OF THE NERVOUS SYSTEM.
N-FS en-effs ARE NOT CANCER BUT GROW RELENTLESSLY
AND HAVE NO EFFECTIVE THERAPIES.
Surgery is for sure the standard of care.
The trouble with surgery is it's very difficult to
remove the tumor, without damaging the nerve.
DOCTOR BLAKELY IS STUDYING THE IMPACT OF AN ALREADY
F-D-A-APPROVED DRUG ON NF-TWO TUMORS.
BEVACIZUMAB bev-ah-SIZZ-uh-mab IS GIVEN INTRAVENOUSLY,
EVERY THREE WEEKS FOR 30 TO 60 MINUTES.
THE DRUG SHRINKS THE BLOOD VESSELS NEAR THE TUMOR,
MAKING THE TUMOR SMALLER.
If there was something that could prolong my hearing
there wasn't a doubt, I had to try.
THIRTY-SIX PERCENT OF THE TRIAL PARTICIPANTS GAINED
BACK HEARING ON THE DRUG.
AND 60 PERCENT OF THOSE PATIENTS KEPT THEIR HEARING,
EVEN WHEN THEY WERE OFF THE DRUG FOR THREE MONTHS.
It has not only stopped the hearing loss but my hearing
has actually gotten better by about 30 percent.
LIFE-CHANGING TREATMENT FOR THOSE IN THE PRIME OF
I'M MARTIE SALT, REPORTING.