At some point in the future I have no doubt scientists will cure NF2. Cure would literally mean a person no longer has NF2 after the treatment. As of now that is not possible. NF2 is a chromosomal disorder, meaning it is programmed into our DNA, and a part of every cell in our bodies. The best way we can fight the disease now is to find drug therapies to stop tumor growth. Currently the only way to “treat’ NF2 is by surgically removing tumors that are causing a problem, or radiating them. The procedures themselves cause almost as much risk as the tumor, if not more in certain circumstances. The tumors can grow anywhere, on and through any nerve, choking it out and causing loss of functions. It is common for a person with NF2 to become blind, deaf, paralyzed or have limited control of the extremities, have a loss of urinary and bowel control, an inability to speak and subsist on a feeding tube. All of this can happen in a single person over time from this disease. This is not an exaggeration, or an extreme example. My Grandmother, Uncle and Mother were all deaf, partially blind, bedridden and unable to control their personal functions for years before passing on. That is why it is absolutely critical that we raise funds for research, because nobody should have to suffer through these cruelties of nature.
There are several tumor growth suppression therapies being researched now that may have the capability to stop NF tumors from growing. Propolis is a drug therapy I am currently taking as part of a non-clinical trial. In a recent study mice were implanted with NF1 tumors and then treated with Propolis, the tumors were suppressed 90% in 100 days. Propolis is extracted from the resin bees use to build their hives, and has something in it called CAPE which has proven tumor fighting abilities. CAPE blocks the PAK enzyme which is responsible for the abnormal cell activity that leads to tumor growth. The specific form of Propolis I am taking is called Bio30, and it is available from Manuka Health in New Zealand for less then a dollar a day for treatment. Propolis has been used as an over the counter herbal remedy to strengthen the immune system for many years.
I have been taking Propolis for one year this month. Before beginning treatment I had a slow but steady progression of tumor growth on each biannual MRI. After 6 months of treatment my MRI showed no growth of any of my tumors. I am due for another MRI in the next couple of months, and will be sharing my results then.
If you are interested in Propolis treatment for NF1 or NF2 you should check out the “NF2TrialTalk” yahoo groups list. Trial Talk is the place to find information on all current drug therapies for NF, including the home of the Propolis Bio30 chart.
Everything in this post is from my own personal knowledge, and I have checked my facts as thoroughly as possible. I am still not a doctor, and if anyone has any further information please feel free to share it in the comments.