In this article you will find hives symptoms and treatment as well as causes of hives.
First of all, thank you so much for coming. We come from California, Texas, Utah, New York, Georgia. I am not going to name them all. It would take too long. Thank you for the sacrifices you made to be here, to be away from your families, the financial sacrifices. We appreciate all that. But it's a special time, and it's a special place that we are all here. You don't have to worry about, "I can't hear" or "I stumble." I fell almost twice this weekend myself. But before we start, I want to thank some people for coming. Number one, Dr. Welling. I am going to say a few personal things. He is a great man! He is dedicated to the NF2. He does drug research. He wants our lives to be better. He cares about the quality of our lives. He is a patient- oriented physician.
I will tell one story that will prove this point a million times over. I had brain surgery in January. About a month later, I developed spinal fluid. Steve called Dr. Welling. To make a long story short, Dr. Welling, he was in Phoenix at the time. They actually admitted me to the hospital. And that afternoon, Dr. Welling walks in my room. He got off the airplane, came straight to Ohio State Hospital to see me. He didn't even go home. I know some of you are patients of Dr. Welling. We all have our own stories to tell about what a great physician he is, and caring wonderful man. t's a privilege and honor that he takes care of us the way he does. Thank you so much.
Next is Andrea Crago. She is from PRI, Professional Reporters, Inc. She makes this possible for us. We all would be staring at each other, making funny faces. She brings the world of speech, so we can take advantage of the great things we will "hear" this morning.
Dr. Welling, he got back at 1 a.m. this morning from Europe. He is with us here this morning. We appreciate that. I want to thank the volunteers that helped out this weekend. It's a big event. I couldn't have done this without this person taking over and that person taking over. Thank you for all your help.
Good morning, everyone. I have never used C.A.R.T., so I am a little nervous about that. But we are here this morning for a memorial for our crew member, Rachelle Swafford. Her love of the Crew is filling this room. As well as her understanding and her appreciation of the importance of what the Crew does. The fact that we reaped strength and Encouragement. Her love is in testimony by the presence of her family here today.
You know, we have many new Crew members here. It's marvelous to see this group! We become quickly attached in this group, for those of you who are new, because when you start any relationship, you start conversation by common ground. You find what you have in common and you begin conversation, and you become truthful with one another. That deepens your relationship.
We can never say to any member of this family, Deb, Ray, Danielle, or Bryan, that we understand how they feel. No one can ever understand how one individual feels in loss. But if there is one thing that everyone in this room has in common, we understand loss. All kinds of losses. Not just life, but abilities, socialization, possessions, friends. So we in this room have a lot in common.
There's a question that's asked many times: Is your glass half empty or half full?
Based on my knowledge and experience as someone with NF2 who has dealt with facial paralysis after the facial nerve issues during brain surgery, doesn't show any signs of healing or movement till about 4 to 6 months after the damage occurs, where everyone is different it could be longer or shorter then that but a good gauge on about what to expect and the majority of the healing that will occur will be in the first year. A few things can be a factor in how much heals.
- Physical Therapy, Exercise
- Food, Suppliments and Medication
- Facial Animation Surgery
The facial nerve feeds smaller nerves and muscles that go to different parts of the face. When the nerve is damaged those smaller veins are not sent enough blood for the circulation which is necessary for muscles to move.
A good amount of facial paralysis can heal between physical therapy and acupuncture. In physical therapy they show you face exercises to regain movement again, I suggest chewing gum a lot as part of that and starting acupuncture as circulation starts back up again. Acupuncture helps to encourage blood to flow back to the different nerves in the face to encourage movement. Starting both within a few months after a nerve is damaged and for that entire first year is important in determining how much it will be able to help.
Some amount of nerve damage can heal after the first year, but the majority of the healing will happen in the first year. I believe food and medication choices could play a part in the percentage of healing as well. Antioxidants help encourage blood flow by helping to send more oxygen to veins while some medications that are meant to slow down cell growth could also be a factor against healing. So in effect, some chemotherapy options, supplements or foods even that might slow down cell growth in my opinion should be held off for as long as possible after surgery to give yourself enough time to heal, but you need to do what's right for you.
Facial animation is typically not a consideration till sometime after the nerve is damaged based on how much your nerves heal on their own. Talk to your doctors.
- Lori Davila
October 14, 2010
Product Review - 7-12-10
I recently had an opportunity to try out the UdiDuo System, made available by the interpreter services at NYU. I highly recommend anyone with hearing issues to try out one of these devices to determine how it might be useful to you.
- Lori Davila
This neat system is a great assistance aid for one on one communications for anyone with hearing issues including :
- individuals who are new deaf and do not know any other form of communication.
- a hearing person needs to communicate with someone who is deaf and does not know ASL (American Sign Language), or is too difficult to speech read.
- individuals who are learning ASL. This would work well as a good instructional tool to type a word and then sign it and have added dialogue by typing as needed.
- if you need to have a discussion with someone who does not know ASL or someone who cannot sign very well.
- if you need to have a conversation with someone that includes to many technical words that would require the major part of the conversation too be mostly finger spelling if ASL were used.
- doctor's visits where a hearing impaired person needs to understand exactly what a medical professional is saying, word for word.
- a discussion with someone with speech problems.
Two connected computers, each facing opposite directions. As the person you are communicating with types you can read it on the screen as well as see them and in turn type back a response that will show up on their display. No internet access needed. This device would not only be good for doctor's visits but in communicating with others with hearing problems or speech problems who you might need to talk to.
ASL or lip reading alone will not help in every situation and sometimes you might need more than either in cases like a doctor's visit, or even a work environment, where you need to understand exactly what someone is saying, which is where devices like this can help.
Link - www.scomm.com
Neurofibromatosis Type II (NF2), is also known by the name "MISME Syndrome" (Multiple Inherited Schwannomas, Meningiomas and Ependymomas), or Bilateral Acoustic NF (BAN), is a genetic Autosomal Dominant condition. It is an Autosomal Dominant, genetic condition that affects an individual throughout the course of their life. The missing gene that results in NF2, the tumor suppressor gene, should create a protein known as MERLIN (Moesin-Ezrin-Radixin-Like Protein), also referred to as Schwannomin or Bilateral Acoustic NF (BAN). When the Merlin Protein is missing, tumor development occurs.
NF2 results in slow growing typically benign (noncancerous) tumors, primarily in the Central Nerve System; these are nerves in the brain and alone the spinal cord. These tumors result in different forms of nerve damage depending on actual location of each tumor that grows. Despite development of earlier issues that might develop, signs of hearing loss are usually the typical point of NF2 diagnosis for many individuals. Additionally, while Central Nerve System tumors can damage the different nerves for vision, NF2 commonly also results in eye issues unrelated to tumor nerve damage.
NYU is the only hospital in the metropolitan area offering a complete team of doctors experienced with and focused on NF2. It is one of the very few such places in the country. For that reason, our group members tend to favor NYU doctors.
However, there are some excellent doctors unaffiliated with NYU who deal with various aspects of NF2.
Dr. Roland to Receive 2010 Wholeness of Life Award at Ceremony on October 28
J. Thomas Roland Jr., MD, is this year's recipient of the Wholeness of Life Award from HealthCare Chaplaincy, a nonprofit organization that specializes in multifaith, spiritually centered healthcare. Every year, HealthCare Chaplaincy, in coordination with the Department of Pastoral Care, honors a select number of healthcare professionals in metropolitan New York who embody the chaplaincy's commitment to care for the whole person, encompassing spirit, body, and mind. The honorees have all earned a reputation among their colleagues for caring holistically for patients and co-workers by showing respect for the dignity of people, demonstrating a commitment to excellence and caring, and exhibiting compassion and understanding of the spiritual needs of individuals regardless of cultural and religious differences.
Dr. Roland, who is the Mendik Foundation Associate Professor of Otolaryngology, chair of the Department of Otolaryngology, and associate professor of neurosurgery, is a pioneer and expert in cochlear implants. In addition to serving as the co-director of our Cochlear Implant Center, he has also brought his expertise and services to those in need in Uganda-performing surgery and training others to perform various types of ear surgeries.
He was nominated for this award by several colleagues, including Maria Corbo, the former director of international and corporate services, John Golfinos, MD, chair of the Department of Neurosurgery, and Susan Waltzman, PhD, professor of otolaryngology and co-director of the Cochlear Implant Center, with support from an international patient.
Neurofibromatosis Type II (NF2) is a genetic neurological disorder that causes benign tumors to grow within the central nervous system and the peripheral nervous system. NF2 is characterized by bilateral vestibular schwannomas (acoustic neuromas). The majority of NF2 patients (approximately 90%) develop bilateral vestibular schwannomas.
Observation (Watch and Wait)
Patients who are asymptomatic may not need treatment immediately. Patients should undergo periodic MRI scans so that doctors can monitor the growth of the tumors. Doctors will determine how often a patient will need to undergo an MRI. Doctors will advise patients as to when treatment will be necessary as well as which types of treatment would be appropriate for a particular case.
Types of tumors which commonly develop in NF-2 patients:
What causes NF2?
Surgery for Tumor Removal
Three common surgical approaches are used to remove acoustic neuromas: Middle fossa approach, Retrosigmoid approach and Translabyrinthine approach. Several factors determine which approach the surgeons will use for a particular patient.
Gamma Knife Surgery
Also known as Stereotactic Radiosurgery.
CI (Cochlear Implant): In some cases, a patients auditory nerve will still be intact after an acoustic neuroma is removed and the nerve may be functioning well enough for a patient to benefit from a CI.
ABI (Auditory Brainstem Implant): The majority of NF2 patients use an ABI. In many cases during surgery to remove acoustic neuromas, the auditory nerve is severed or not functioning well enough for a patient to benefit from a cochlear implant.
Medication to Stop or Shrink Tumors
A few medications are in trials that we have hope will stop this condition. Progress is being made. Speak to your doctor.
Join our awareness campaign and help spread the word! Neurofibromatosis affects more people than cystic fibrosis and muscular dystrophy combined, yet most people have never even heard of it. Many people have trouble pronouncing the word neurofibromatosis. Neurofibromatosis Northeast has launched our #TheWordIs campaign to generate more awareness of neurofibromatosis and the many people this […]
The post Help Spread the Word appeared first on Neurofibromatosis Northeast.
Neurofibromatosis affects more people than cystic fibrosis and muscular dystrophy combined, yet most people have never heard of it. Many people have trouble pronouncing neurofibromatosis. But, May is Neurofibromatosis Awareness Month! This year, we started our #TheWordIs campaign to generate more awareness of neurofibromatosis and the people this disorder affects. Our goal is to spread […]
The post May Is Neurofibromatosis Awareness Month. Take The Challenge! appeared first on Neurofibromatosis Northeast.
Camp New Friends offers children and teens with neurofibromatosis (ages 7-17) seven days and six nights of summer fun and social connections. Camp is located in the Shenandoah Mountains of West Virginia, on the grounds of Timber Ridge Camp, 90 miles west of Washington, DC. Camp New Friends serves to reduce the stigma and isolation […]
The post Camp New Friends- July 16 to 22, 2017 appeared first on Neurofibromatosis Northeast.
Miranda Ehrstein was diagnosed with Neurofibromatosis type 1 (NF1) when she was just 18 months old. Now she is an outgoing and enthusiastic 12 year old girl, who loves stuffed animals, Science and swimming, and is determined to never let her NF1 hold her back. Read about Miranda’s journey with NF1, through the eyes of her loving family.
The post Patient Spotlight: Miranda Ehrstein appeared first on Neurofibromatosis (NF) Center.
Community Consulting Teams of Boston (CCT) is working with Neurofibromatosis Northeast (NFNE) to help understand what we are doing well and how we could improve our support and services to patients and families. CCT is a not for profit organization comprised of business school graduates who are interviewing a broad array of NFNE’s stakeholders including […]
The post NF Patient Survey appeared first on Neurofibromatosis Northeast.
St. Louis Children’s Hospital weekly podcast, Radio Rounds, is a free series for healthcare professionals featuring Washington University pediatric specialists. MORE »
The post SLCH Radio Rounds Podcast with Dr. Stephanie Morris appeared first on Neurofibromatosis (NF) Center.
Dear Friends, Have you ever wondered what we do and where your money goes? In this issue we hope to demonstrate the impact that NF Northeast makes on behalf of the people we serve – patients and families who live with NF. NF Northeast was founded around a kitchen table 28 years ago when NF […]
The post A Message from the Executive Director appeared first on Neurofibromatosis Northeast.
Please consider writing to your Senators and Representative in Congress. There are instructions in the Advocacy Toolkit, or just reach out to the NF office. We are happy to help because your voice needs to be heard! Dr. Tina Kell, a dentist living in Maine who suffers with schwannomatosis, could not join the NF Advocates […]
The post Dr. Tina Kell – An Advocate for Federally Funded NF Research appeared first on Neurofibromatosis Northeast.
The following article in The New England Journal of Medicine shows promising results from a clinical trial that was conducted at the National Institutes of Health. At the bottom of the page see a video of Dr. Brigitte Widemann, acting chief of the National Cancer Institute’s (NCI) Pediatric Oncology Branch, who led the phase 1 […]
The post NIH Plexiform Clinical Trial Results appeared first on Neurofibromatosis Northeast.
Lindsay Rosenfeld and Andrés Lessing are facing NF’s biggest challenges head-on! When Lindsay Rosenfeld started dating the man who is now her husband, Andrés Lessing, she had no idea what neurofibromatosis (NF) was; however, for almost a decade, it has affected almost every aspect of her life, including how the couple would plan their family. […]
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Marty’s Furniture is spreading goodwill and making it ‘stressless’ to give to NF this holiday season. From November 23, 2016 – January 16, 2017, consumers will receive $200 off the purchase price of any Stressless seating or $400 off the purchase price of select Stressless Mayfair model recliner and ottoman from Ekornes Inc. when they […]
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Back by popular demand for your holiday giving are these 16 oz. beautifully scented candles that are created exclusively for NF Northeast. These are thoughtful and meaningful gifts for relatives, friends, teachers or care givers. Keep in mind that once you see and smell them you will wish you ordered one for your self as […]
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#GivingTuesday is a global day to give back, help others, and embrace this season of joy and hope. Join this tradition of generosity by supporting Neurofibromatosis Northeast. Join the movement, join us. Here are some ways you can participate: Make a donation! Together, we can lead the efforts to find effective treatments for NF. Reach […]
The post Please support NF appeared first on Neurofibromatosis Northeast.
NF Northeast offers college scholarships for individuals who have NF and are continuing their education after high school. The annual deadline for applications is April 15th. The NF Northeast Scholarships are awarded to assist persons with neurofibromatosis (NF) to continue their education after high school and pursue undergraduate degrees. Grants are awarded annually to go towards […]
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To date, there is no cure for NF1 and there are no effective therapies to reverse disease symptoms or to prevent new ones from arising. Research and development in the field is hampered by several challenges, including: * A highly variable clinical care setting * Limited access to patient tissue samples for clinical research * Lack […]
The post An Overview of the NF1 Research Environment appeared first on Neurofibromatosis Northeast.
Alexandra Powers Cellucci has joined the NF Northeast Board of Directors. In making the announcement, Board Chair Lori Ryan commented, “We are so delighted to have Alex join the Board of Directors. As a person who lives with NF2 she brings her valuable personal experiences to the organization. Neurofibromatosis Northeast has been adding members to […]
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