Points
NF2 Awareness
Posted by bingles to Alternative Medicine, Sep 16, 2009 9:40am
Hearing Improvement after Bevacizumab "Avastin" in Patients with Neurofibromatosis type 2. This is really great news for NF2 people, Avastin is a wonder drug. Only problem is people like me who have insurance still can not get the med paid for. It would be great for NF2 to get the kind of exposure your show can bring it by doing a show about NF2. I have attached a link about the results they are getting. Maybe even a show about how the trials and how they work, Dr. Scott Plotkin is an excellent research Dr. This is a horrible disease that has really good options right now, HOW DOES ONE GET TREATMENT STARTED? Surgery is horrible and leaves the person with NO Balance, Facial Paralyzed, not able to blink, throat not able to swallow yet Insurance company's would rather put one thru that then pay for this awesome new treatment. There has been a few people to get ins. to pay for it and more exposure would help open the doors up even more, FDA is working on a faster approval. Again exposure would help speed this. You guys have a great show I watch all the time. Keep up good work, check out the link below... Its a miracle drug!!! Genentech Corp. ROCKS!!
http://content.nejm.org/cgi/content/short/361/4/358
JeffLeway
Sep 16, 2009 10:11am
Excellent Idea I too have NF2 and this is a highly over looked disease. I have been fighting to get Avastin treatments started for several months my insurance company is fighting me tooth and nail on this. I wonder if Obama's plan will help or hurt? Maybe thats another good show to have? Jeff
jberlin4
Sep 17, 2009 8:09am
Absolutely!! NF2 needs to be "heard" it affects many people in many ways. This disorder has been "silent" long enough. "The Doctors" appears to be a contemporary program that has the 'courage' to bring this debilitating disorder to the forefront. I'm not only an advocate of NF2 research, but I'm also a patient with a long family history of NF2.
allison1887
Sep 17, 2009 9:07am
I also have NF2 and would love to see more info about this disease brought to light.
KITTYHAWK
Sep 17, 2009 1:13pm
I TOO HAVE NF 2 THE PUBLIC NEEDS TO BE MORE AWARE OF THE PHYSICL EFFECTS OF THIS DISORDER. 3 OF MY 5 DAUGHTERS INHEIRTED IT FROM ME ALSO 4 GRANDCHILDREN. I WOULD LIKE TO HAVE INSURANCE COVER THIS NEW DRUG FOR MY OFF SPRING
KITTYHAWK
Sep 17, 2009 1:22pm
SO FAR I DON'T SEEANYONE MENTIONED MOST CASES THE NF 2 PATIENT IS LEFT DEAF.. I AM DEAF HAVE BEENSINCE AGE 53 ALLOF ONY DAUGHTERS AND GRANDKIDS THAT HAVE NF 2 HAD SURGERY BEFORE THE TUMORS DISTROYED THE HEARING NERVE THE GRANDKIDS ARE AGE 16, ,12 THEOLDER ONES 27 AND 24 THIS DRUG WOULD BE WONDERFUL FOR THEM TO STOP TUMOR GROWTH
jaimec7299
Sep 17, 2009 7:47pm
I also have Nf2 and I think something definitely needs to be done about the lack of awareness and our fight to finding a cure. This would be a great show, and a great chance to help raise awareness. All of us are affected differently by this disease, as it attacks the nervous system and depending where the tumors grow, that is the part where function is at risk to be lost. Please help us be heard!!!
myideas9
Sep 25, 2009 10:30am
It would be fantastic if you would make this a focus of your show- this is a devastating disease. Someone I love has NF2 - he is a musician and music teacher- music is his whole life (both his passion and his livelihood). He is slowly going deaf and faces many other horrors that likely await him because of this terrible disease. Insurance companies don't give assurance really- he pays almost 300 per month for what's really just a catastrophic policy (7500 out of pocket before they'll help at all) and they DON'T want to pay for this amazing drug that could help him and so many others out there. Please help bring awareness to this very important and compelling topic.
lindaingles
Sep 25, 2009 2:10pm
this avastin drug is used by oncologist for testing in nf2 patients to save there hearing and other horrible nf2 tumors. but also its important to touch base hoe this avastin drug is excellent in all clinic trials for cancer. because it stops the blood flow to tumors. so this is an excellent topic for the doctors show since it will help nf2 patients an cancer patients both...but right now its just not accesible due to high cost of treatment... and insurance wont pay for it due to still not approved. how many people have to die because insurance companies and drug companies rule all of us!! SAD my two sons could save some hearing with this drug. help us please
lindaingles
Sep 25, 2009 2:11pm
hurrah for brian who suggested this. we all need more people who will help nf2 genetic disorder and at same time help cancer
San Diego Laker
Sep 28, 2009 8:54am
I hope you investigate this potential wonder drug. It already has shown promising resutls with people who have liver disease, heart disease, and kidney disease. If people who suffer from NF2 can benifit as well that would be terrific. Pllease check this out.
rhoneeazd
Sep 28, 2009 2:10pm
I agree! I think this is a great idea. We need to raise more awareness about NF2. There had been shows about NF but they generally talk about NF1 and not NF2. There are major differences between the two and I just feel that we need to clarify this. And definitely raise awareness to NF2. I have NF2 myself. And have had many surgeries already.
vacgirl710
Sep 29, 2009 7:10am
There could be many topics addressed with the one topic of NF2 if the show topics were put together. NF2 can relate to: Dandy's syndrome, Rare conditions in children, Drug trials, Neck/back problems, depression, chronic pain, vestibular issues, vision issues blindness, dry eyes, weighted lids etc.. Multipule surgrie issues, ABI hearing aides, choclear implants, you name it and NF2 could probaly be part of it due to the number of tumors the disease creates and the treatments that we dont have yet. We need awareness!!!! and HELP!!!!
vacgirl710
Sep 29, 2009 7:14am
I think ther could be potential for more than one show if producers are looking for follow ups. It could be Diagnoses, how the disease works, treatments etc...Real life people living and losing the nerves/abilities one tumor at a time!!!
diverbeck
Oct 1, 2009 7:16pm
vacgirl710, I have proposed doing a show on the brain surgeries NF2 patients need to go through - perhaps documenting it and have offered my own coming up. It can be found under the "Surgery" topic titled "Undergoing a Major Brain Surgery". You can vote for both and by offering differeht areas dealing with NF2, we would generate more awareness. Different show, facets, and featuring a series of shows about NF2 is a Great Idiea! Give mine a look see too at /produce/idea_comment/1010
kdetle254
Oct 4, 2009 10:52am
Would love to learn more about pharmaceuticals that are available for NF2 and NF1............Neurofibomatosis affects 1 in 3,000 people. We need more people aware of this genetic disorder!!
lindaingles
Oct 29, 2009 11:17am
the govertment is now doing full clinic trials to find out more on NF2. this horrible life threatening genetic disorder. it leaves us deaf n no balance and paralized.
lindaingles
Oct 29, 2009 11:27am
avastin has been provin to stop tumor growth and even shrinking the tumors so much that people who lost hearing are having lots of hearing come back. this happened to my son who has only had two treatments and has lots of hearing come back. this is very good news for nf2 or even cancer tumors for shrining them n stops this is a wonder drug that insurance companies are making it very difficult to access. (if at all). i would like to use this drug for my other son to stop the growth of a brain tumor and spinal cord tumor