Recent News

While NF2 Information and Services - Recent News section shares new news articles a few times a week, there are older news topics that including basic explanations on different NF2 issues, some differences between NF1 and NF2 as well as other topics also worth looking at.

  1. Acupuncture Shown to Ease Pain in ER Patients
    Date Shared: June 22, 2017 | Source: PsychCentral

    A new study has found that the use of acupuncture in emergency departments is a safe and effective alternative to pain-relieving drugs for some patients.

  2. Gene Editing: Crispr-Cas9
    Date Shared: June 19, 2017 | Source: New York Times
  3. Sulforaphane reduces hepatic glucose production and improves glucose control in patients with type 2 diabetes
    Date Shared: June 18, 2017 | Source: Science. American Association for the Advancement of Science.

    Also read about NF2 and Sulforaphane for Vestibular Schwannoma (VS) / on NF2 Information and Services Drug-Trial listing.

  4. Cancer in the organ donor
    Date Shared: June 16, 2017 | Source: Dpt. of Abdominal Surgery & Transplantation

    "Tumors in the donor: what is the risk? Cancer can be transmiRed by organ transplantation"

    We need to ask what could this mean for people with NF who are considering listing themselves as organ or blood doners.

  5. New tool helps pick puppies most suited to guide dog training
    Date Shared: June 16, 2017

    Puppy Training Supervisor Questionnaire (PTSQ) is a new method to help successfully select puppies that would make good guide dogs.

  6. Pembrolizumab (Keytruda)
    Date Shared: June 15, 2017

    Additional sources and information about Pembrolizumab hera on NF2 Information and Services. Includes a list of conditions Pembrolizumab is in trial for.

  7. Pembrolizumab (Keytruda) a PD-1 blocker
    Date Shared: June 11, 2017 | Source: New York Times

    With the release of a new tumor drug treatment Pembrolizumab (Keytruda) quickly passed by the FDA for some Cancers; cancer of the pancreas, prostate, uterus, or bone and currently in trial for Neurofibromatosis Type 1.

    • Could this treatment potentially also help people with NF2 or other tumor conditions?
    • Is this a breakthrough in what could be a new line of tumor drug treatment possibilities for all other tumor conditions?
  8. Antibody Targeted Therapies in Meningiomas: A Critical Review
    Date Shared: June 9, 2017

    "Surgical resection being the most successful approach for meningomas is not always possible pertaining to its inapproachable locations of tumors. Radiation therapy is sometimes restricted by neurotoxicity and tumor size, while chemotherapy regimens have been minimally effective as treatment option in meningiomas. Therefore, treatment of the remaining subset of aggressive, unapproachable or refractory meningiomas remains challenging. This makes it a topic of concern to explore more strategies for its management."

    "Recent practices have shown increased interests in the utilization if monoclonal antibodies. Among the most prospective are TRAIL therapy followed by antibodies targeting receptors such as PDGFR, EDGF, VEGFR, PD-1. These therapies can be utilized to reduce the stability of meningiomas. There is a need for initiation of large scale Randomized controlled trials to improve outcomes in meningioma patients and formation of a more productive management strategy. "

  9. FDA seeks removal of opioid painkiller from the market
    Date Shared: June 9, 2017

    "The Food and Drug Administration on Thursday asked a drug company to remove its opioid pain medication from the market, the first time the agency has made such a request because of the public health consequences of abuse."

    "The agency concluded after an extensive review of Endo Pharmaceuticals' Opana ER that the "benefits of the drug may no longer outweigh its risks." The company reformulated the drug in 2012 to make it more difficult to snort, but the FDA said that move actually led to more injections - and a major HIV outbreak."

  10. I Lost My Voice, but Help Others Find Theirs
    Date Shared: June 7, 2017

    A Neurofibromatosis Type 2 (NF2) story in the news.

  11. NF Awareness Month - Slideshow of Shares
    Date Shared: June 1, 2017
  12. NF Awareness Month - Shares in Text format
    Date Shared: June 1, 2017

    Awareness Months shares were also typed for the website, for individuals following NF2 Information and Services do not know Englush.

  13. Awareness Day 31 - Fatigue from Tumor Nerve Damage
    Date Shared: May 31, 2017

    Neurofibromatosis (NF); NF1, NF2, and Schwannomatosis (SWN/NF3) can leave individuals with severe fatigue from tumor cell growth on nerves which can result in; B12 Deficiency and a Poor Immune System. Learn more.

  14. Awareness Day 30 - NF2-associated Polyneuropathy
    Date Shared: May 30, 2017

    Individuals with Neurofibromatosis (NF) may face isolation as a result of; Hearing Loss, or Skin Surface Tumors.

  15. Awareness Day 29 - Isolation - Deafness and Skin Tumors
    Date Shared: May 29, 2017
  16. Awareness Day 28 - Doctor visit Issue
    Date Shared: May 28, 2017
  17. Awareness Day 27 - Identifying an Individual with NF2
    Date Shared: May 27, 2017

    Issues for Neurofibromatosis Type 2 (NF2) typically, cannot be seen outside of an MRI of brain and spine, or without an eye exam.

    Criteria for diagnosis of NF2 requires more than the presence one (1) brain tumor.

  18. Awareness Day 26 - The NF2 Gene
    Date Shared: May 26, 2017
  19. Awareness Day 25 - Epilepsy from Brain Tumor TBI
    Date Shared: May 25, 2017

    The likely causes of Epilepsy for individuals with Neurofibromatosis Type 2 (NF2) when dealing with or recovering from Traumatic Brain Injury (TBI), including ...

  20. Awareness Day 24 - Nerve Tumors and Pain
    Date Shared: May 23, 2017

    Neurofibromatosis (NF) results in the growth of nerve sheath tumors... These tumors cause damage to the nerve ending, surrounding nerves, muscles, bones, and organs. Prescription strength pain killers are often necessary and sometimes not strong enough...p>

  21. Awareness Day 23 - Vertigo, Dizziness, and Lightheadedness
    Date Shared: May 24, 2017

    When individuals with Neurofibromatosis Type 2 (NF2) start to develop the growth of Vestibular Schwannoma (VS) it can easily result in; Vertigo, Dizziness, Lightheadedness, and Nausea. Once this starts, the person is at higher risk of facing these issues when medications include these things as possible side effects. Some of these medications include...

  22. NF2 Awareness Day - May 22
    Date Shared: May 22, 2017

    Neurofibromatosis Type 2 (NF2) is a genetic condition which develops because of damage to Chromosome 22.

    • NF2 best known simply as a genetic condition that results in brain tumors that cause hearing loss and possibly other brain tumors. Doctors rarely expect to see more. - Hospitals and Doctors need to know more about NF2.
    • NF2 is a Genetic condition where tumors primarily grow on nerves for hearing, and through the entire central nervous system; brain and spinal cord. NF2 tumors may grow in all regions of the body depending on an individual's mutation of NF2.
    • NF2 leaves many with single sided deafness before the diagnosis of NF2.
    • Many individuals with NF2 are deaf (98%), and partially blind by the age of 30.
    • Many with NF2 face Paraplegia or Tetraplegia (Quadriplegia) from either Spinal Cord Tumors or Peripheral Neuropathy.
    • NF2 is not a Cancer condition but shares genetic commonalities with several Cancer conditions.

    There is no cure for Neurofibromatosis Type 2

    Research for a Cure is needed.

  23. Awareness Day 21 - Brain Tumors and NF2
    Date Shared: May 21, 2017

    Approximately 50% of individuals with Neurofibromatosis Type 2 (NF2) grow Meningioma tumors, in addition to...

  24. Awareness Day 20 - Visible Tumor Masses
    Date Shared: May 20, 2017

    Individuals with Neurofibromatosis; Neurofibromatosis Type 1 (NF1), Neurofibromatosis Type 2 (NF2), and Schwannomatosis (NF3/SWN) may grow tumors seen as visible bumps just under the skin surface, but...

  25. Awareness Day 19 - Eye / Vision Issues
    Date Shared: May 19, 2017

    Individuals with NF should see an Opathologist to monitor eye health for...


  26. Awareness Day 18 - Facial Nerve Damage / Facial Paralysis
    Date Shared: May 18, 2017

    95% of individuals with Neurofibromatosis Type 2 (NF2) develop Vestibular Schwannoma tumors bilaterally (left and right). VS grow for other reasons, but typically only one side.

    The growth of VS can result in damage to Cranial Nerve 7 (CN7), the Facial Nerve resulting in Facial Paralysis. Actual Issues of Facial Paralysis...


  27. Awareness Day 17 - Tinnitus and Hearing Loss
    Date Shared: May 17, 2017

    When Tinnitus starts, it is important to see an Otolaryngologist also known as ENT (Ear Nose and Throat Doctor) immediately and Neurologist for an MRI.

    Things that can Help include...


  28. Awareness Day 17 - NF1 Day
    Date Shared: May 17, 2017

    NF1 Day is May 17th: Neurofibromatosis Type 1 (NF1) is a condition which develops because of damage to Chromosome 17.

    1. Neurofibromatosis (NF) is a genetic condition more prevalent than other genetic conditions of; Cystic Fibrosis, hereditary Muscular Dystrophy, Huntington's Disease, and Tay Sachs combined.
    2. NF1 issues are not contagious, they can only be passed from parent to child.
    3. NF is a common condition, yet individuals with NF1 continue to have difficulty with diagnosis, even if others in their family are known to have NF1.
    4. Confirmed NF1 diagnosis by a Neurologist is necessary to receive proper care, but without a diagnosis, it is not possible to get the necessary help. Things an individual with NF1 may need include; help with pain management from tumor growth on nerves, or help with education.
    5. Even with a diagnosis, individuals with NF1 have difficulty seeing proper care of issues.
    6. There is no cure for Neurofibromatosis.

  29. Awareness Day 16 - The Brain and Learning Issues
    Date Shared: May 16, 2017

    Individuals with NF1 and NF2 may face different forms of cognitive issues. NF1 issues atart at birth, NF2 issues are only the possible result of tumors. Learn more...


  30. Awareness Day 15 - Vertebrae and Spinal Cord Damage
    Date Shared: May 15, 2017

    Individuals with NF may develop; Scoliosis, Kyphosis, or Kyphoscoliosis, but for each NF type it would be the result of different issues and options....


  31. Awareness Day 14 - Bone Health and Vitamin D
    Date Shared: May 14, 2017

  32. Awareness Day 13 - Vestibular System and Balance
    Date Shared: May 13, 2017

    Vestibular Rehabilitation Therapy (VRT) is necessary when...


  33. Awareness Day 12 - Malignancy and End of Life Decisions
    Date Shared: May 12, 2017

    Unlike NF1 people with NF2 are less likely for Tumor Malignancy. However...


  34. Awareness Day 11 - Regaining Sound with Hearing Implants
    Date Shared: May 11, 2017

    Neurofibromatosis Type 2 (NF2) are at a 95% risk of Deafness between ages of 18-30. Learn more about hearing options...


  35. Awareness Day 10 - Hearing / Hard of Hearing (HoH) / Deafness
    Date Shared: May 10, 2017

    Hallmark of NF2 is the growth of Schwannoma on the Vestibulocochlear Nerve, which branches to the; Cochlear Nerve (hearing) and Vestibular Nerve (balance). These tumors are referred to as Vestibular Schwannoma (VS), or Acoustic Neuroma (AN). NF2 chance of left and right VS is 95%, deafness between 18 to 30. Learn more ...


  36. Awareness Day 9 - Café-au-lait (CALMs)
    Date Shared: May 9, 2017

    The presence of Café-au-lait Macules (CALMs) should raise the suspicion of a genetic condition and physical examination for cause is important. Learn more ...


  37. Awareness Day 8 - Statistics and Confusion of NF Types
    Date Shared: May 8, 2017

    The statistics are uncertain because the chances of NF1 occurrence is likely less than believed as many who believe they have NF1 may, in fact, have either; NF2, or SWN. Learn more ...


  38. Awareness Day 7 - Kidney Issues
    Date Shared: May 7, 2017

    Individuals with Neurofibromatosis (NF); NF1, NF2, and SWN, are a high risk of Kidney Issues, not because of NF itself but as a result of methods used to monitor or manage NF. Reasons for possible kidney issues...


  39. Awareness Day 6 - MRI's and Growth Risks
    Date Shared: May 6, 2017

    A tumor or tumors for individuals with NF may have no growth for several years and may remain dormant after initial growth. However, "Stable - No Growth" for a year or years does not mean a tumor is dormant, they may start to grow again years later. It is also possible while some tumors that appear stable they are slow growing, which is why MRI reviews should include a review of scans from years prior as a comparison. [Asthagiri, 2017]...

  40. Awareness Day 5 - Tumor Treatments
    Date Shared: May 5, 2017

    An individual with Neurofibromatosis (NF); NF1, NF2, and SWN, may grow one or possibly hundreds of tumors. It is fortunate each growth does not require treatment since there is no treatment available to permanently put an end to all tumors of any type that form in individuals with NF; Neurofibroma, Schwannoma, or Meningioma...


  41. Awareness Day 4 - Tumors and Nerve Damage
    Date Shared: May 4, 2017

    Neurofibromatosis Tumors of Neurofibroma and Schwannoma are nerve damaging masses. These tumors can result in...


  42. Awareness Day 3 - Neurofibromatosis - Spontaneous (Mosaic) and Diagnosis
    Date Shared: May 3, 2017

    Neurofibromatosis (NF); Neurofibromatosis Type 1 (NF1), Neurofibromatosis Type 2 (NF2), and Schwannomatosis (SWN / NF3) are Autosomal Dominant genetic conditions. However; NF can develop as a result of Spontaneous mutations and may be Mosaic, where not all cells in their body include damaged NF that can result in tumors or other issues.

    Many Spontaneous NF individuals receive diagnosed after they have children. A first-generation individual who may have Mosaic development might have fewer issues and tumors than their children if the NF mutation occurred early in fetal development.

    Medical Education about NF needed: It takes more than one doctor type for confirmed diagnosis of NF. It will help if the following doctor types know signs their patients may have NF, to help redirect individuals to other doctors for diagnosis; Pediatricians, Primary Care Doctors, Dermatologists, Ophthalmologist, Otolaryngologist/Ear Nose Throat (ENT), Neurologist. Learn more about doctor types you may need to see for NF2 at: https://www.nf2is.org/specialists.php


  43. Awareness Day 2 - Genetics - Neurofibromatosis Autosomal Dominance
    Date Shared: May 2, 2017

    Neurofibromatosis (NF) are genetic conditions of Autosomal Dominant inheritance; Neurofibromatosis Type 1 (NF1), Neurofibromatosis Type 2 (NF2), and Schwannomatosis (SWN / NF3).

    Neurofibromatosis Type 2, NF2, Neurofibromatosis, NF1, SWN, Schwannomatosis, 
				Autosomal Dominance
    • NF1: If a person male or female has NF1, there is a fifty-percent (50%) chance children male or female are at risk of NF1. If they do not, their children will not be at risk.
    • NF2: If a person male or female has NF2, there is a fifty-percent (50%) chance children male or female are at risk of NF2. If they do not, their children will not be at risk.
    • SWN: If a person male or female has SWN, there is a fifty-percent (50%) chance children male or female are at risk of SWN. If they do not, their children will not be at risk.

  44. Awareness Day 2 - Neurofibromatosis Type 2 (NF2) Criteria
    Date Shared: May 2, 2017
    Primary Finding Added Features needed for Diagnosis
    Bilateral Vestibular Schwannoma
    None
    First-degree relative with NF2


    Unilateral Vestibular Schwannoma, or
    Any two (2) other NF2-Associated lesions:
    Meningioma, Schwannoma, Glioma, or Cataracts
    Unilateral Vestibular Schwannoma


    Any two (2) other NF2-Associated lesions:
    Meningioma, Schwannoma, Glioma, Neurofibroma, or Cataract
    Multiple Meningiomas


    Unilateral Vestibular Schwannoma, or
    Any two (2) other NF2-Associated lesions:
    Schwannoma, Glioma, Neurofibroma, or Cataracts

  45. Awareness Day 2 - Schwannomatosis (SWN) Criteria
    Date Shared: May 2, 2017

    The diagnostic criteria for a person to be diagnosed with Schwannomatosis (SWN) follow a strict guideline established by the NIH. A diagnosis for SWN may if a person meets one of the conditions identified below. A diagnosis for SWN requires conditions identified in source.


  46. Awareness Day 2 - Neurofibromatosis Type 1 (NF1) Criteria
    Date Shared: May 2, 2017

    The NIH diagnostic criteria for NF1 in an individual who has two or more of the following features on source...


  47. Awareness Day 1 - Neurofibromatosis Type 2 (NF2)
    Date Shared: May 1, 2017

    Graphic Overview of Neurofibromatosis Type 2 (NF2)

    Neurofibromatosis Type 2, NF2, MRI, Spine, Brain, genetics, tumor growth, balance, hands, butterfly

  48. Awareness Day 1 - Neurofibromatosis
    Date Shared: May 1, 2017

    Neurofibromatosis (NF) include three types; Neurofibromatosis Type 1 (NF1), Neurofibromatosis Type 2 (NF2), and Schwannomatosis (SWN/NF3). NF are genetic tumor predisposition, but issues an individual with NF may face are not all the result of tumors. Which issues an individual may have, would depend on their NF type.

    Tests like MRI's, eye exams, blood tests, or other tests that may be necessary at different points in life, early diagnosis is important.

    NF type and exact form would also determine region or regions of the body tumors may develop.


  49. Awareness Day 1 - Genetics
    Date Shared: May 1, 2017

    Developments in Genetics has proven that there are not one, or two, but three forms of Neurofibromatosis (NF). Neurofibromatosis Type 1 (NF1), Neurofibromatosis Type 2 (NF2), and Schwannomatosis (SWN / NF3). The Neurofibromatosis conditions; NF1, NF2, and SWN, affect people regardless of; gender, race, and country.

    1987: Mapping for genes for NF separated people with NF into two (2) separate diseases while identified the location of NF1 on Chromosome 17 and NF2 on Chromosome 22.[1]

    2003: Schwannomatosis is molecularly and clinically distinct from NF2.[2]

    2014: Genetic testing for accurate Schwannomatosis diagnosis was finally available. Some diagnosed as NF1 or NF2 were finally able to be properly diagnosed with Schwannomatosis.[3]

    Sources
    • Evans, D. G., et al. "A genetic study of type 2 neurofibromatosis in the United Kingdom. I. Prevalence, mutation rate, fitness, and confirmation of maternal transmission effect on severity." Journal of medical genetics 29.12 (1992): 841-846. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1016198/
    • Congressionally Directed Medical Research Programs. NF2 Storyboard. (2010) http://cdmrp.army.mil
    • Piotrowski, A., Xie, J., Liu, Y. F., Poplawski, A. B., Gomes, A. R., Madanecki, P., ... & Messiaen, L. M. (2013). Germline loss-of-function mutations in LZTR1 predispose to an inherited disorder of multiple schwannomas. Nature genetics. http://www.nature.com/ng/journal/vaop/ncurrent/full/ng.2855.html

  50. May - Neurofibromatosis Awareness Month
    Date Shared: April 30, 2017

    Neurofibromatosis (NF) include three types; Neurofibromatosis Type 1 (NF1), Neurofibromatosis Type 2 (NF2), and Schwannomatosis (SWN/NF3).


  51. Aneurysms in neurofibromatosis type 2: Evidence for vasculopathy?
    Date Shared: April 25, 2017

    "Given the increasing use of Bevacizumab (Avastin™), a vascular endothelial growth factor inhibitor which results in an increased risk of bleeding, it is important to ascertain if there is a predisposition to vascular abnormalities in NF2."

    Afridi, Shazia K., et al. "Aneurysms in neurofibromatosis type 2: Evidence for vasculopathy?." American Journal of Medical Genetics Part A (2017).

  52. CRISPR/Cas9: Gene Editing - Disease-Free DNA
    Date Shared: April 12, 2017 | Source: The Science Times.

    "Reportedly, the CRISPR/Cas9 (CRISPR) procedure is dependent on the genome which every cell in a body contains, which is more like the personal code of a human body. The scientists use the same process followed by the E. coli bacteria to edit the DNA. The scientists are now looking to use the same DNA-cutting process for editing parts of cells in plants, animals and human beings that could lead up to causing diseases." (The Science Times)

    For some conditions CRISPR is "...expected to arrive in the next five years or sooner." (The Science Times) Expectations of CRISPR for the genetic condition of Neurofibromatosis Type 2 (NF2), is expected to take longer. (Doctor Asthagiri, video "Learn from a Leading Expert in NF2", 2016)


  53. (CRISPR)/Cas9 Analysis Revealed a Novel Role of Neurofibromin in mTOR Signaling
    Date Shared: April 12, 2017 | Source Date: February 2017 | Source: American Society for Biochemistry and Molecular Biology. Molecular & Cellular Proteomics.

    "Neurofibromin (NF1) is a well-known tumor suppressor that is commonly mutated in cancer patients."

    "...findings may provide novel insights into therapeutic approaches targeting NF1-deficient tumors."


  54. Drugs That Work In Mice Often Fail When Tried In People
    Date Shared: April 11, 2017 | Source Date: April 2017 | Source: Shots. NPR Science Desk.

    Most potential new drugs fail when they're tested in people. These failures are not only a major disappointment, they sharply drive up the cost of developing new drugs.

    A major reason for these failures is that most new drugs are first tested out in mice, rats or other animals. Often those animal studies show great promise.

    But mice aren't simply furry little people, so these studies often lead science astray. Some scientists are now rethinking animal studies to make them more effective for human health.


  55. Raising Hope: After a Neurologic Diagnosis
    Date Shared: April 10, 2017 | Source Date: 2015 | Source: American Academy of Neurology. Neurology Now.

    Small Wins - Small, measurable goals. Recovery is more like a marathon than a sprint. Enjoy the Moment, Thrive by Staying Healthy, Realize the New Me, Knowing Symptoms, The impact of Doctor Assumptions, Memory, Physical Activity, and Medication.

    1. Enjoy the Moment
    2. Thrive by Staying Healthy
    3. Realize the New Me
    4. Denial - Avoiding doctors and ignoring symptoms are both parts of denial, but even if it may be painful - to hear a diagnosis, it almost always opens the door to healing, especially if you have a rare degenerative condition.
    5. Knowing Symptoms - Diagnosis confirming symptoms are connected to a disease or situation, can offer relief.
    6. The impact of Doctor Assumptions - Doctors often assume the worst-case scenario. Unfortunately, this can affect outcomes.
    7. Memory - For people with degenerative diseases, it's possible to recruit different parts of the brain to compensate for areas that are diminished/dysfunctional.
    8. Small Wins - Small, measurable goals. Recovery is more like a marathon than a sprint.
    9. Physical Activity - Activity can boost brain function in regions associated with executive function, such as planning, scheduling, and working memory.
    10. Medication - Watch Your Meds Each person reacts to drugs differently.

  56. Biomedical Studies -
    Things that can happen in studies that result in studies for treatments; Accidental contamination, Risk of Bias, and Improper Funding
    Date: April 8, 2017 | Source: The Wall Street Journal
    1. Accidental Contamination of HeLa has destroyed many studies.
    2. The bottom line was that "most published research findings are false." "The problem is especially acute in laboratory studies with animals, in which scientists often use just a few animals and fail to select them randomly. Such errors inevitably introduce bias. Large-scale human studies, of the sort used in drug testing, are less likely to be compromised in this way, but they have their own failings: It's tempting for scientists (like everyone else) to see what they want to see in their findings, and data may be cherry-picked or massaged to arrive at the desired conclusion."
    3. Finical support for biomedical research has been in sharp decline for some time.

    Open Science Framework has started to share data between researchers for finding treatments faster.


  57. Quickly Assessing Brain Bleeding in Head Injuries Using New Device
    Date: April 6, 2017

    Handheld EEG device quickly determines the severity of the head injury that may reduce the number of CT Scans done, less radiation exposure, lower cost.

    The portable device can evaluate brain injury scan outside of hospitals. Approved in 2016 and are 97% accurate for brain intracranial bleeding or brain trauma injury to determine if additional tests may be needed or not.


  58. Trial: Crizotinib
    Date: April 6, 2017

    "Subsequent studies confirm that inhibition of FAK1 is sufficient to suppress tumorigenesis in animal models of NF2 and that crizotinib-resistant forms of FAK1 can rescue the effects of treatment."

    Source: Troutman, Scott, et al. "Crizotinib inhibits NF2-associated schwannoma through inhibition of focal adhesion kinase 1." Oncotarget 7.34 (2016): 54515. doi: 10.18632/oncotarget.10248 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5342359/
    Link to more: Crizotinib Trial Facts

  59. Tip: Diagnosis by Camera
    Date: April 6, 2017

    Get help faster from your doctor from home. A doctor who already has an existing health report for you.

    Sometimes it can help to take a picture of yourself, the area of yourself you are concerned you have a health issue with and email the picture to your doctor with an explanation.

    It may not be enough for them to help, but it may be enough for them to say to rush to ER instead of their office, where doctors are ready to help with your specific issue.

    Hold doctor business cards for email addresses.

    Facial Paralysis / Drop Foot / Swelling / Surgical Scar Issue / Eye Issue


  60. Nerve Health/Nerve Damage
    Date: April 5, 2017

    What can we do to heal from surgery a little faster, and more completely?

    Is there anything that can be done to slow down nerve damage progression?

    B12/B Complex - Why and when it might be better in pill form.


  61. Electric skull cap helps brain cancer patients live longer
    Date: April 4, 2017

    Treatment for: Glioblastoma Brain Tumors

    Treatment: Combination Treatment - Oral Drug + Electric Skull Cap

    Reason for Share: Can this potentially help fight Meningioma or Schwannoma brain tumors?


  62. Drug-Based Treatments (Clinical Trials)
    Date: March 30, 2017

    Up to date listing on Drug-Based Clinical Trial treatments for #NF2. Includes

    1. control of Tumors Types expectations; Vestibular Schwannoma ( VS ), Meningioma and/or Ependymoma
    2. year each drug trial started
    3. potential drugs to watch information for
    4. all Discontinued/Dropped NF drug-based trials

  63. The Brain's Way of Healing by Norman Doidge: Neuroplasticity and Chronic Pain
    Date: March 30, 2017

    Chronic pain my be from brain expectation of pain.

    "It is the brain, not the body, that experiences pain. Repeated trauma can cause the brain to experience more pain than is warranted, a phenomenon referred to as chronic pain. This gives hope that chronic pain can be remedied through treatment of the brain...


  64. Free Interpreter Service by Law in American Hospitals
    Date: March 29, 2017

    Deaf Patients or Deaf Caregivers

    If you are deaf and need medical care at an American hospital, an interpreter is required to be made accessible to you. If you are deaf and are the caregiver, partner, parent, or spouse of someone that needs medical attention, an interpreter is also required to be made accessible.

    When an interpreter is not available in a hospital, hospitals are working with video conference for interpreters to help.


  65. MERLIN - Facial Nerve Damage - Mouth and Other Infections
    Date: March 28, 2017

    Recrudescence of herpes virus infections following resection of schwannomas. An antiviral role of merlin?


  66. Tip
    Date: March 26, 2017

    If you have NF and you have an incident of a health issue that is new to you, call your doctor.


  67. Reminder: Wear Purple March 26
    Date: March 26, 2017

    Learn More about Epilepsy and Seizures.


  68. Seizures and Support Animals
    Date: March 24, 2017

    As we plan for Purple Day, March 26, for Epilepsy Awareness anyone who has seizures or children with seizures might want to review the information about service and support animals. The link includes sources to connect to for different services.

    International service animals source included on the page.


  69. Epilepsy Awareness
    Date: March 24, 2017

    Help raise Epilepsy Awareness and wear purple Sunday, March 26.

    Read and learn why and when you may be at risk if you have NF2.

    It takes more than one Seizure to have Epilepsy.


  70. Epilepsy Awareness
    Date: March 23, 2017

    Help raise Epilepsy Awareness and wear purple Sunday, March 26.

    Read and learn why and when you may be at risk if you have NF2.

    It takes more than one Seizure to have Epilepsy.


  71. Turmeric / Curcumin: Death by IV Infusion
    Date: March 23, 2017 | Source: www.10news.com

    30 year old women dies from Tumieric taken by IV

    How much is too much? Talk to your doctors about everything.


  72. Stem Cell Treatments
    Date: March 17, 2017

    "Dangers of unwarranted claims about the healing power of stem cells." [Branndenton.com]

    Stem Cell Treatments are not standardized treatments methods for good reasons. They do not always respond as expected. More research is needed for proper use of any reason.

    "Stem cells are cells with the potential to develop into many different types of cells in the body." [Medlin Plus. Stem Cells.]


  73. How to Enunciate
    Date: March 13, 2017

    Clear Speech for Easier Lip Reading

    Share with your family who cannot or will not learn sign language. This will help with Lip Reading.


  74. Medication Tips
    Date: March 10, 2017
    1. Do not hide all of your medication is "Safe Place" if you have a bad memory.
    2. If a medication is a strong prescription drug of "controlled substance," put most but not all in a secondary location.
    3. Understand that doctors will not refill medications under "controlled substance" easily with claims of lost medication.

    (Many prescription painkillers are under the classification of "controlled substances.")


  75. Family Planning
    Date: March 10, 2017

    If you have Neurofibromatosis; NF1, NF2, and Schwannomatosis, you should know the risks and options for birth control for best timing and things to do for safe family planning. Risk limit is not just passing NF to a child.

    Some issues may include; Tumor Growth, Medication induces infertility, Medication-InducedIf Miscarriage...


  76. Repairing Damaged Axons
    Date: March 9, 2017

    I think they are looking at something that may eventually help nerve damage including Peripheral Neuropathy including Polyneuropathy. Neuron healing limit may be if the Schwann cell is removed from the nerve.

    This means it may help some damage not all. Schwannoma = overgrown Schwann cell in the nerve.


  77. Meditation and Biofeedback/Neurofeedback
    Date: February 24, 2017

    Stress can make a small issue seem worse.

    A minute or two of time alone can help reduce stress and help with issues of; 1) inability to Sleep despite Insomnia, 2) Headaches (including Migraines), 3) Tinnitus, 4) Blood Pressure, 5) Improve Circulation, 6) Anxiety and 7) issues for ADHD.

    Method to do this explained in the link.


  78. Sulforaphane Vegetables and Tumors
    Date: February 15, 2017

    Included is a reason you may want to eat; Broccoli, Broccoli Sprouts, Brussels Sprouts, Cabbage, Cauliflower, Savoy Cabbage, Red Cabbage, Kale, and Horseradish if you have Vestibular Schwannoma or Schwannoma in other regions of your body.


  79. Cigarettes and NF
    Date: February 10, 2017

    Tumors, Immune System, and Additional Risks

    Neurofibromatosis (NF); (NF Type 1, NF Type 2, and NF Type 3, also known as Schwannomatosis) Cancer, or not Cancer, and why papers that note things that might make result in more harm to people with Cancers may also be dangerous to people with NF.


  80. Antioxidants
    Date: February 10, 2017

    Possible "Healthy" Food Issue

    Some foods are said to be better than others for tumor prevention, but what this may mean when we are prone to tumors or have tumors already may be another matter as explained in a link from the National Cancer Institute about Antioxidants. But did the mice only have an issue because of the concentrated amount? Unknown

    In 2010, it was known people who are not Cancer prone react differently to foods than those who are looking to prevent tumor or Cancers. The only debate is which foods other than antioxidants this may apply to.


  81. Healthcare Plan
    Date: February 7, 2017

    3 legal focuments to be ware of prior to first major medical treatment. Make certain in advance what you want is decided by you, not automatically by the medical system.

    Important paperwork to file for, with a legal aid. It is best with a legal aid of some sort as the documentation needed for these can be changed yearly.

    1. Living Will
    2. Healthcare Proxy
    3. Power of Attorney

  82. Nerve Cell Damage from Schwannoma
    Date: February 2, 2017

    Schwannoma tumors are an overgrowth of Schwann Cells. Schwann Cells are a part of Nerve Cells for communication of senses and for impulse for movement of the body.


  83. Hearing Implant Sound Processors
    Date: January 24, 2017
    • Cochlear Ltd: Nucleus 6
    • MED-EL: OPUS 2
    • Advanced Bionics

  84. Medication Tips: Over the Counter and Prescription
    Date: January 23, 2017

    Over the Counter medications should be taken as seriously as Prescription medications. Ideally, before purchase of any medication, be aware of side effects, but even then, following the steps below is important. Each time a pill is taken unless taken daily, it is best to take the following precautions: Step 1...


  85. Decaffeinated Coffee
    Date: January 3, 2017

    Things you should know if you drink or plan to drink Decaffeinated Coffee and are concerned about Cancers, Gastric Acidity, Iron Deficiency and Arthritis.


  86. Tylenol Dose Warning
    Date: January 3, 2017

    Question: How safe is Tylenol (Acetaminophen)?

    Answer: Not as safe as you may think.


  87. NF2 Story: Jennifer Vanier Monusko
    Date: December 30, 2016

    Jennifer Vanier Monusko, born with NF2, shares her story of December 29, 2009


  88. Cranial Nerve 8 and Vestibular Schwannoma
    Date: May 12, 2016

    The Cranial Nerve 8, the Vestibulocochlear Nerves starts at the center of the brain and splits to become the balance nerve and the hearing nerve, Vestibular Schwannoma, also known as Acoustic Neuroma grown on, and between these two nerves.

    A battle everyone born with NF2 will face, some earlier than others, is Bilateral Vestibular Schwannoma. NF2 typically also results in other tumors in the - brain, spinal cord and potentially other parts of the body, but Bilateral VS is the only issue consistent to everyone with NF2.


  89. The Cost of NF
    Date: May 6, 2016

    Three forms of Neurofibromatosis (NF): NF Type 1 (NF1), NF Type 2 (NF2) and Schwannomatosis (SWN) are very different, but they all result in the growth of slow growing but still painful, dangerous, potentially life threatening tumors. There is no treatment to permanently; stop, shrink and prevent more NF tumors from growing, but all NF tumors do not require treatment.

    The constant need to see doctors, purchase medications, have different medical test and treatments are a financial burden that results in issues that increases the risk of the dangerous, life threatening health issues, when not lowering the quality of life due to financial limitations.

    Read more to understand; the unfortunate aspects of NF, why a cure for each NF type is needed and why it is to the advantage of many other than people with NF to find a cure.


  90. Neurofibromatosis Tumors
    Date: May 4, 2016

    Neurofibromatosis (NF), which is a combination of three genetic diseases; NF1, NF2 and Schwannomatosis all result in the slow growth of typically Benign, non-Cancerous tumors, that can start to grow typically at birth, even if none are symptomatic till years later. While each type of NF results in...


  91. NF Criteria: NF1, NF2 and Schwannomatosis
    Date: May 2, 2016

    The three forms of Neurofibromatosis are; NF1, NF2 and Schwannomatosis. The criteria for a diagnosis of each form of NF are included here and should be known by anyone with any form of NF.

    It is important to understand that while NF is rare, it is statistically unlikely to have more than one form of NF. It is also statistically likely for a person with any of the three forms to be told they might have more than one form of NF. Since tumor growth for each is different it is important to know for a fact which form a person has. Due to similarities between the three forms, the accidental diagnosis of more than one form of NF is an easy one for doctors to make.


  92. NF Genetics Inheritance
    Date: May 3, 2016

    Neurofibromatosis (NF): NF1, NF2 and Schwannomatosis, are a genetic Autosomal Dominant conditions, which means each child a parent with NF1, NF2 or Schwannomatosis male or female has a 50% chance to born with the form of NF their parent has.


  93. NF Criteria: NF1, NF2 and Schwannomatosis
    Date: May 2, 2016

    The three forms of Neurofibromatosis are; NF1, NF2 and Schwannomatosis. The criteria for a diagnosis of each form of NF are included here and should be known by anyone with any form of NF.

    It is important to understand that while NF is rare, it is statistically unlikely to have more than one form of NF. It is also statistically likely for a person with any of the three forms to be told they might have more than one form of NF. Since tumor growth for each is different it is important to know for a fact which form a person has. Due to similarities between the three forms, the accidental diagnosis of more than one form of NF is an easy one for doctors to make.


  94. Science Timelines
    Date: May 1, 2016

    Neurofibromatosis (NF), initially called Von Recklinghausen disease, is not one but three separate genetic conditions that all result in the growth of tumors and neurological issues. The three diseases are called; Neurofibromatosis Type 1 (NF1), Neurofibromatosis Type 2 (NF2) and Schwannomatosis.

    The history of NF is complicated and the development of genetic testing was needed for researchers to realize that there are in fact three forms, but this fact is not even commonly known today by all doctors since NF is rare and in some cases not even identified at all. The results are a common issue of inaccurate diagnosis of the wrong NF form and individuals not receiving the proper testing for treatments needed.


  95. Neurofibromatosis Awareness Month
    Date: April 30, 2016

    Reminder: May is Neurofibromatosis Awareness month. The attached link includes some facts that can be shared with others.


  96. Clinical Trial Misconceptions
    Date: April 18, 2016

    There are a few misconceptions to Neurofibromatosis Type 2 (NF2) Clinical Trials that everyone with NF2 should know; 1) they are not Chemotherapy, 2) that are Tumor Target Treatments, 3) they are not guaranteed to work, 4) there is more than one and 5) side effects of not are still potentially helpful.


  97. Meditation
    Date: April 15, 2016

    Meditating has been proven to do many things including increasing their ability to think, control anxiety and can be included in life to help with overall health.


  98. Vestibular Schwannoma - Not only NF2
    Date: April 11, 2016

    Vestibular Schwannoma are not exclusively to NF2, the concern of not just Single Sided Deafness but Deafness in Both Ears means different treatment methods should at least be possible to be done by the doctor.


  99. Tumor Hearing Treatments
    Date: April 4, 2016

    Dr. Asthagiri shared the success rates between Radiosurgery and Surgery. Radiation treatments of any kind result in side effects just as easily as Surgery, one difference is most Radiation side effects are not issues till well after treatment. Surgical options do not always include hearing loss, but depend on the tumor and Surgical Approach.


  100. NYU Langone NF Education: 11-15-15 NF1 & NF2: History and Diagnostic Procedures
    Date: March 31, 2016 - Part 1

    In the NYU NF Education 2015 event shared here, medical speakers of the NYU NF (Neurofibromatosis) Clinic discuss the history of NF1 and NF2, how they help patients as a complete multidisciplinary team and facts about different simple medical tests that can be an advantage to anyone with NF regardless of location of treatment.


  101. NYU Langone NF Education: 11-15-15 - Part 2 Thomas Roland, M.D.:Hearing Preservation & Hearing Loss Options
    Date: March 30, 2016

    In the 2015 NF Education event at NYU Langone Medical Center, Dr. Thomas Roland, who is the Chairman of the Department of Otolaryngology, ENT, CI and ABI hearing implant surgeon, explains some hearing loss options including delay options to keep hearing longer, implants and the importance of watch and wait.


  102. NF2 Ohio Gathering: 10-10-15
    Date: March 22, 2016

    The 2015 NF2 Ohio Gathering invited doctors to speak about NF2 with key speaker Dr. Asthagiri previously from the NF2 NIH study, now at the University of Virginia. Some of the topics included; 1. tumor issues including but not limited to 2. the difference of NF2 Vestibular Schwannomas and non-NF2 Vestibular Schwannomas biologically as well as in terms of reactions to treatments, 3. why clinical trials to date are limited, 4. Hearing Implant options, and 5. Vestibular Rehabilitation for balance issues.


  103. Free Interpreter Service by Law in American Hospitals
    Date: March 18, 2016

    Fortunately the ADA and the Department of Justice, Americans with Disabilities Act of 1990, interpreter use during all hospital related visits is legally required and is not a cost to the patient. This includes some of the options explained here.


  104. Recovery to Heal and Minimize Pain
    Date: March 10, 2016

    The number of tumors a person with NF2 might develop in their life varies from person to. The number of tumors determines the number of treatments an individual might need. It is therefore important to know how to recover between treatments and to delay damage from tumor cell growth. These options include...


  105. NF2 Facts and Recent News
    Date: March 09, 2016

    The NF2 Information and Services website contains a great deal of information about: Information and Services, NF2 News and Relevant Medical Updates. Once the organization raises enough in donations for free distribution of NF2 print material, we hope our newer news section will help with recent advancements to help people even more.


  106. IV Drain for CSF Leak
    Date: March 07, 2016

    This article explains how a Craniotomy method was done to remove some NF2 tumors and explains how an IV drain was put in place to drain the Cerebrospinal-Fluid (CSF), to prevent a CSF leak following surgery.


  107. Tinnitus - Hearing Loss Issue: Not Just an NF2 Issue
    Date: October 23, 2015

    Tinnitus is a phantom sound people start to hear when hearing loss develops. This is a problem for older people, people with different health conditions and many medications commonly taken, sounds heard might be:


  108. Cancer-killing Stem Cells
    Date: October 14, 2014

    New research of genetically engineered stem cells for Brain Cancer that kill tumor cells but nothing else.


  109. 3D Printed Science and Medical Items
    Date: October 14, 2014

    3D printing is the creation of items with a machine that melts plastic in layers. Some of the items of interesting notice at the 2014 New York - Makers Faire were science and medical in nature.


  110. Nanoparticle Dry Eye Treatment
    Date: October 13, 2014

    Development of a clinical trial of a dry eye treatment, that will not just coat the eye, but bind to the eye itself.


  111. Why some clothes could pose a safety hazard during MRI exams
    Date: September 9, 2014

    Due to the magnets used for the imaging, facilities clearly state no metal is allowed to be on an individual walking into the room of an MRI. Some fabric includes silver or metal fibers, which might be seen on clothing labeled as Anti-Microbial.


  112. NF2 and NF1 - False Combination Diagnosis
    Date: August 27, 2014

    NF1 treatments are different from NF2 treatments proper diagnosis is important.


  113. Bacteria and Tumor Death
    Date: August 19, 2014

    In an article seen at Genetic Engineering & Biotechnology News, called "Shrinking Tumors with Injections of Engineered Bacteria" in April 2014, bacteria use to destroy tumor cells was the topic in review.


  114. Tumors and the Immune System
    Date: August 11, 2014

    The importance of vitamins and food management which can help raise the immune system.


  115. NF2 Cure - Still Waiting
    Date: July 31, 2014

    For anyone who is looking for something that will; definitely stop, definitely shrink, definitely prevent the creation of more tumors in a person with NF2 who has VS or other tumor forms and locations, there is none. There are however options to potentially help slow tumor progression down.


  116. Audiovestibular Morbidity
    Date: June 13, 2014 Source: National Institute of Health Information: Hearing Loss Prevention

    Data reviewed to determine complete hearing loss for individuals with NF2 as a result of:

    • dramatically different Schwannomas tumor sizes along the Vestibulocochlear Nerve (CN8), these tumors are more commonly known as Vestibular Schwannoma but referred to in the report as Cochleovestibular Schwannomas (CSV)
    • when no tumor is even seen
    • or why hearing loss progression can be either sudden, gradual or can be lost and returned before finally complete loss
    • an attempt to understand why Avastin helped some individuals and not others

  117. Pregnancy after Chemotherapy Agents
    Date: May 20, 2014 Source: PubMed Information: Nerve Damage

    Today research is finally proving that children with health issues parents did not have are the result of different things a mother is exposed to prior and during pregnancy, especially with chemotherapies.


  118. Vitamin B12 - Aid in Neuropathy Prevention and Recovery
    Date: April 16, 2014 Source: NF2 Information and Services Information: Nerve Damage

    Vitamin B12 is important in the formation of all cells in the body, especially red blood cells and the covering of nerve cells (myelin). The body needs myelin for nerves to function properly.


  119. Other Optic Abnormalities
    Date: April 4, 2014 Source: NF2 Information and Services Information: Optometry

    NF2 results in Juvenile Cataracts and Other Optic Abnormalities. Some of those other eye issues are explained here.


  120. Cancer Treatment Revolution
    Date: March 25, 2014 Source: ScienceDaily Information: Chemotherapy

    Cancer treatment revolution potential with new drug explains expectations of a new medication in development that can attack Cancer Cells in multiple ways and result in fewer side effects.


  121. What are Cognitive Abilities and Skills, and How to Boost Them?
    Date: March 21, 2014 Source: SharpBrains Information: Brain Function

    Cognitive Brain Development is an issue with different brain tumor management treatments.


  122. Why Is Dark Chocolate Good for You? Thank Your Microbes
    Date: Mar 20, 2014 Source: Scientific American Treatment: Anti-inflammatory

    Improving Health with Dark Chocolate consumption Dark Chocolate is 75% Cocoa Powder. "New research suggests that beneficial bacteria that reside toward the end of our digestive tract ferment both the antioxidants and the fiber in cocoa."


  123. Shift workers beware: Sleep loss may cause brain damage, new research says
    Date: Mar 19, 2014 Source: CNN Information: Brain Function

    New Research: Sleep loss may cause brain damage


  124. Vestibular Rehabilitation Therapy (VRT) - WHAT IS VESTIBULAR REHABILITATION THERAPY?
    Date: Mar 19, 2014 Source: CNN Information: Balance Rehabilitation

    Vestibular Schwannoma physical therapy.


  125. Tumor banking, in hopes of future cure
    Date: Mar 17, 2014 Source: MSN Information: Planning Ahead

    Be it chemotherapy or gene therapy, saving tumors after surgery may eventually be helpful in your own treatment needs.


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