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Chester boy aged 2 trials breakthrough chemotherapy drug  
Felicity Dawe, from Chester, was diagnosed with neurofibromatosis type one when she was just three months old. She is now trialing a drug at Great Ormond Street Hospital. (Source: the Mail online | Health)
Source: the Mail online | Health - July 28, 2017 Category: Consumer Health News Source Type: news

Pakistani man, 56, with hundreds of bubble-like tumours
Habib Ullah Khan, 56, from Karachi, has had his body ravaged by the small lumps - believed to be a form of neurofibromatosis. He said: 'People have ridiculed me throughout my life.' (Source: the Mail online | Health)
Source: the Mail online | Health - July 26, 2017 Category: Consumer Health News Source Type: news

New research offers hope to neuro-tumor patients
(University of Plymouth) New research published today, July 10, 2017, online in the journal Oncogene could offer hope to the thousands of, mainly young, people affected by the hereditary condition Neurofibromatosis 2 (NF2). In addition to NF2 disease there could be potential benefit for other cancers with the same mutations. (Source: EurekAlert! - Medicine and Health)
Source: EurekAlert! - Medicine and Health - July 9, 2017 Category: International Medicine & Public Health Source Type: news

Neurofibromatosis type 1 sufferer has hundreds of tumours
Every day Noreen Steenson from Belfast, Northern Ireland, wakes up to a new lump, caused by rare and incurable neurofibromatosis (NF) type 1. She has been left housebound. (Source: the Mail online | Health)
Source: the Mail online | Health - June 21, 2017 Category: Consumer Health News Source Type: news

4 questions parents have about moyamoya disease
Last month, families from across the country gathered at Boston Children’s Hospital to celebrate World Moyamoya Day. The expert speakers at the Moyamoya Family Day Symposium shared the latest information about this rare but very serious condition with parents and patients alike. Moyamoya disease occurs when the walls of the internal carotid arteries — the vessels that supply blood to important areas of the brain — become thickened and narrowed. As a result, blood flow to the brain slows, making blood clots more likely. Kids with moyamoya disease are at significantly higher risk of having a stroke, as well...
Source: Thrive, Children's Hospital Boston - June 13, 2017 Category: Pediatrics Authors: Jessica Cerretani Tags: Ask the Expert Diseases & Conditions Dr. Edward Smith moyamoya Moyamoya Disease Program Source Type: news

Scripps Florida scientist wins $2 million grant to study childhood disorder
(Scripps Research Institute) Assistant Professor Seth Tomchik of the Florida campus of The Scripps Research Institute (TSRI) has received $2 million in funding from the National Institutes of Health's National Institute of Neurological Disorders and Stroke (NINDS). The new five-year grant funding will support the study of neurofibromatosis type I, an inherited disorder that results from genetic mutations affecting a protein called neurofibromin (Nf1). (Source: EurekAlert! - Medicine and Health)
Source: EurekAlert! - Medicine and Health - May 31, 2017 Category: International Medicine & Public Health Source Type: news

Evidence behind reports of new baldness cure is a little thin
Conclusion The current study identified a group of cells in the hair follicles of mice which are important both in forming the hair shaft to allow hair growth, and also in maintaining hair colour. So far this research has been in mice, but the basic biology of cells in mammals is very similar, so it seems likely that the findings would also apply to humans. Researchers are also likely to want to perform tests on human cells in the laboratory to confirm their findings. The findings represent an advance in what is known about how hair grows and maintains its colour. However, this doesn't automatically mean the researchers ar...
Source: NHS News Feed - May 8, 2017 Category: Consumer Health News Tags: Genetics/stem cells Older people Source Type: news

Boy, 8, whose face has been distorted by giant tumours
Amare Stover, from Decatur, Alabama, was born with neurofibromatosis type one - a genetic disorder that causes tumors to develop all over his body. (Source: the Mail online | Health)
Source: the Mail online | Health - May 1, 2017 Category: Consumer Health News Source Type: news

8-Year-Old Writes Letter Requesting A Park Swing For Brother With Disabilities
After visiting a new local park, 8-year-old Naomi Gwynne had an important request for the “park builders.” She wanted them to include a swing for her brother with disabilities and other kids like him. Naomi’s mother, Miriam Gwynne, told The Huffington Post that she recently took Naomi and her twin brother, Isaac, to a new park near their home in Scotland. Naomi and Isaac both have autism. Isaac is nonverbal and has neurofibromatosis type 1 and learning difficulties. He is also vision-impaired. During their visit to the park, Naomi noticed there were no swings designed with kids like her brother in mind, s...
Source: Healthy Living - The Huffington Post - March 22, 2017 Category: Consumer Health News Source Type: news

Norfolk girl bullied for facial tumour finds love
Sophie Walker, from Norfolk, was cruelly dubbed 'tumour girl' after inheriting rare condition neurofibromatosis. But now she's finally getting the last laugh. (Source: the Mail online | Health)
Source: the Mail online | Health - March 22, 2017 Category: Consumer Health News Source Type: news

Fighting for Kennedy: Coping with moyamoya disease
If you happen to be waiting in line at the supermarket with Kennedy Grace Cheshire, you’ll likely leave the store with a whole new group of friends. This outgoing five-year-old can’t resist introducing herself to her fellow shoppers — and then introducing them to each other. “She’s never met a stranger,” says her mother, Amber. Kennedy, who lives in Texas, brought that playful attitude to the East Coast last year when she and her family arrived at Boston Children’s Hospital for evaluation and treatment. At age two, she had been diagnosed with neurofibromatosis 1 (NF1), a genetic co...
Source: Thrive, Children's Hospital Boston - March 21, 2017 Category: Pediatrics Authors: Jessica Cerretani Tags: Diseases & Conditions Our Patients’ Stories Dr. Edward Smith moyamoya Moyamoya Disease Program Source Type: news

'China's Elephant Man' who has a 33lb tumour on his face
Huang Chuncai, from a rural part of central China, has suffered from neurofibromatosis - the name for a number of conditions that cause swellings or lumps - since he was four years old. (Source: the Mail online | Health)
Source: the Mail online | Health - March 1, 2017 Category: Consumer Health News Source Type: news

Father, 47, who has hundreds of tumours across his body
Believed to be suffering from neurofibromatosis, Shadot Hossain, from Shajadpur, Bangladesh, is in a race against time to secure surgery to remove the tumours - and save his sight. (Source: the Mail online | Health)
Source: the Mail online | Health - February 16, 2017 Category: Consumer Health News Source Type: news

Atrial Septostomy and Targeted Therapy in PH With NF1 Atrial Septostomy and Targeted Therapy in PH With NF1
The combination of atrial septostomy with targeted therapy may be an effective approach in the treatment of neurofibromatosis complicated by pulmonary hypertension.BMC Pulmonary Medicine (Source: Medscape Today Headlines)
Source: Medscape Today Headlines - February 10, 2017 Category: Consumer Health News Tags: Pulmonary Medicine Journal Article Source Type: news

Huddersfield father and son both with NF1 discover NHS will only pay for 3-year-old's treatment
Nathan Lewis, 30, and Thiago, from Huddersfield, were both born with neurofibromatosis type 1 - which causes masses. They now both have cancerous tumours as a result of the condition. (Source: the Mail online | Health)
Source: the Mail online | Health - January 12, 2017 Category: Consumer Health News Source Type: news

Kent toddler who suffers from neurofibromatosis receives breakthrough treatment
Skyler McKenzie, of Tonbridge, Kent, suffers from neurofibromatosis, which causes a large number of tumours to appear throughout her body. (Source: the Mail online | Health)
Source: the Mail online | Health - January 8, 2017 Category: Consumer Health News Source Type: news

NIH reports positive results from Phase I trial of selumetinib to treat pediatric neural tumours
The US National Institutes of Health (NIH) has reported positive results from its Phase I clinical trial of selumetinib to treat children with the common genetic disorder neurofibromatosis type 1 (NF1) and plexiform neurofibromas. (Source: Drug Development Technology)
Source: Drug Development Technology - January 3, 2017 Category: Pharmaceuticals Source Type: news

Selumetinib Reduces Tumor Volume in Neurofibromatosis Selumetinib Reduces Tumor Volume in Neurofibromatosis
Results of a phase 1 study show this molecular therapy shrinks inoperable plexiform neurofibroma, benign tumors on peripheral nerves related to neurofibromatosis type 1, with an acceptable toxicity profile.Medscape Medical News (Source: Medscape Pathology Headlines)
Source: Medscape Pathology Headlines - December 29, 2016 Category: Pathology Tags: Neurology & Neurosurgery News Source Type: news

Experimental Drug Shows Promise for Disfiguring Tumor Condition
17 of 24 children with neurofibromatosis type 1 saw improvement, but more study neededSource: HealthDay Related MedlinePlus Pages: Children's Health, Medicines, Neurofibromatosis (Source: MedlinePlus Health News)
Source: MedlinePlus Health News - December 29, 2016 Category: Consumer Health News Source Type: news

Pediatric Neural Tumor Shrinkage Shown in Selumetinib Clinical Trial
Early-phase clinical trial of selumetinib in children with common genetic disorder neurofibromatosis type 1 (NF1) and plexiform neurofibromas (Source: Disabled World)
Source: Disabled World - December 29, 2016 Category: Disability Tags: Clinical Trials Source Type: news

Early-phase trial demonstrates shrinkage in pediatric neural tumors
(NIH/National Cancer Institute) In an early-phase clinical trial of a new oral drug, selumetinib, children with the common genetic disorder neurofibromatosis type 1 (NF1) and plexiform neurofibromas, tumors of the peripheral nerves, tolerated selumetinib and, in most cases, responded to it with tumor shrinkage. (Source: EurekAlert! - Cancer)
Source: EurekAlert! - Cancer - December 28, 2016 Category: Cancer & Oncology Source Type: news

Huddersfield boy diagnosed with neurofibromatosis type 1 that his father has
Nathan Lewis, 30, and three-year-old Thiago, from Huddersfield, were both born with neurofibromatosis type 1. It has caused the pair to develop rare tumours. (Source: the Mail online | Health)
Source: the Mail online | Health - November 16, 2016 Category: Consumer Health News Source Type: news

Student, 20, undergoes her 12th operation to remove the tumours on her face
Tina Sayavic, 20, from Llubjana, Slovenia, suffers from a rare condition known as neurofibromatosis type 1 - which started showing its first signs when she was a youngster. (Source: the Mail online | Health)
Source: the Mail online | Health - November 9, 2016 Category: Consumer Health News Source Type: news

Heartbreaking story of the brothers battling a cruel genetic disorder
Adam and Neil Pearson, 31, from Croydon, suffer from neurofibromatosis, which affects them very differently. Adam has huge tumours all over his face, while Neil battles memory loss and epilepsy. (Source: the Mail online | Health)
Source: the Mail online | Health - August 25, 2016 Category: Consumer Health News Source Type: news

India boy with tumour which makes his face droop says he is too scared to leave his village
Bhupinder Singh, 16, from India, suffers from neurofibromatosis. He was born with a small tumour on his eyelid, but as he grew older it engulfed his face, leaving him unable to see properly. (Source: the Mail online | Health)
Source: the Mail online | Health - August 4, 2016 Category: Consumer Health News Source Type: news

The teenage 'elephant man': Boy with tumour which makes his face droop like it is melting says he is too scared to leave his village
Bhupinder Singh, 16, from India, suffers from neurofibromatosis. He was born with a small tumour on his eyelid, but as he grew older it engulfed his face, leaving him unable to see properly. (Source: the Mail online | Health)
Source: the Mail online | Health - August 4, 2016 Category: Consumer Health News Source Type: news

Children 'going blind and risk dying from cancer' as doctors overlook crucial NF1 signs
Despite being more common than cystic fibrosis and being linked to a number of serious complications, the incurable condition neurofibromatosis (NF1) is not checked for in infancy. (Source: the Mail online | Health)
Source: the Mail online | Health - July 24, 2016 Category: Consumer Health News Source Type: news

Morocco mother disowned by husband after facial tumours ravaged her looks
Samira Benhar, 39, from Casablanca, Morocco, has neurofibromatosis, a genetic condition which causes uncontrollable growths along the nerves. She said surgery had given her a new life. (Source: the Mail online | Health)
Source: the Mail online | Health - June 3, 2016 Category: Consumer Health News Source Type: news

Mother disowned by her husband after facial tumours ravaged her looks has life-changing surgery to re-build her face
Samira Benhar, 39, from Casablanca, Morocco, has neurofibromatosis, a genetic condition which causes uncontrollable growths along the nerves. She said surgery had given her a new life. (Source: the Mail online | Health)
Source: the Mail online | Health - June 3, 2016 Category: Consumer Health News Source Type: news

Children’s Tumor Foundation Recognizes Neurofibromatosis Awareness...
Raising Awareness for Genetic Disorder that affects 1 in 3,000(PRWeb May 04, 2016)Read the full story at http://www.prweb.com/releases/2016/05/prweb13387888.htm (Source: PRWeb: Medical Pharmaceuticals)
Source: PRWeb: Medical Pharmaceuticals - May 4, 2016 Category: Pharmaceuticals Source Type: news

Medical News Today: Precision treatment for NF1 steps closer with mutation clues
A new study suggests the particular symptoms likely to arise in a person with neurofibromatosis type 1 may be determined by the particular mutation they have in their NF1 gene. (Source: Health News from Medical News Today)
Source: Health News from Medical News Today - March 31, 2016 Category: Consumer Health News Tags: Neurology / Neuroscience Source Type: news

Anticancer drug restores hearing in some patients with neurofibromatosis
(Johns Hopkins Medicine) In a small clinical study with an anticancer drug that halts blood vessel growth, a handful of people with neurofibromatosis type 2 (NF2) and hearing loss had restoration of hearing. (Source: EurekAlert! - Cancer)
Source: EurekAlert! - Cancer - March 14, 2016 Category: Cancer & Oncology Source Type: news

Anticancer Drug Restores Hearing in Some Patients with Neurofibromatosis (The Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins)
... (Source: National Comprehensive Cancer Network)
Source: National Comprehensive Cancer Network - March 14, 2016 Category: Cancer & Oncology Source Type: news

Neurofibromatosis — Best Data Yet on Risks for Cancer Neurofibromatosis — Best Data Yet on Risks for Cancer
Patients with neurofibromatosis 1 have been reported to be at an increased risk for several malignancies. A Finnish study refines this risk and reports the risk for breast cancer. Survival is also worse for these patients. Medscape Medical News (Source: Medscape Medical News Headlines)
Source: Medscape Medical News Headlines - March 7, 2016 Category: Consumer Health News Tags: Hematology-Oncology News Source Type: news

Tia Leigh with NF1 overjoyed to have her leg amputated
Tia Leigh, 14, from Cwmbran, Wales, was diagnosed with the genetic disorder neurofibromatosis type 1 as a baby. It made her right leg hugely swollen and lumpy - and 7cm longer than her left. (Source: the Mail online | Health)
Source: the Mail online | Health - January 27, 2016 Category: Consumer Health News Source Type: news

U.S. healthcare system really does kidnap teens - victim speaks out
(NaturalNews) A Missouri mother has been accused of medical child abuse after requesting a second opinion regarding her 17-year old son's medical care. Isaiah Rider, who suffers from neurofibromatosis, a rare condition causing tumors on the nerves, was told he could no longer see... (Source: NaturalNews.com)
Source: NaturalNews.com - January 21, 2016 Category: Consumer Health News Source Type: news

Generation of Noninvasive, Quantifiable, Orthotopic Animal Models for NF2-Associated Schwannoma and Meningioma
Schwannomas and meningiomas are nervous system tumors that can occur sporadically or in patients with neurofibromatosis type 2 (NF2). Mutations of the Neurofibromatosis 2 (NF2) gene are frequently observed in these tumors. Schwannomas and meningiomas cause significant morbidities, and an FDA-approved medical therapy is currently not available. The development of preclinical animal models that accurately capture the clinical characteristics of these tumors will facilitate the evaluation of novel therapeutic agents for the treatment of these tumors, ultimately leading to more productive clinical trials. Here, we describe the...
Source: Springer protocols feed by Molecular Medicine - December 31, 2015 Category: Molecular Biology Source Type: news

Toxic secretions from intracranial tumor damage the inner ear
In some cases of vestibular schwannoma, a sometimes-lethal tumor often associated with neurofibromatosis 2 (NF2), secretions from the tumor contain toxic molecules that damage the inner ear. The findings explain why some vestibular schwannomas cause hearing loss even though they are not large enough to compress nearby structures that control hearing. (Source: ScienceDaily Headlines)
Source: ScienceDaily Headlines - December 22, 2015 Category: Science Source Type: news

Researchers examine how neurofibromatosis causes premature cardiovascular disease
(Medical College of Georgia at Georgia Regents University) It's a fairly common genetic condition that can surface as a series of dark skin spots and result in a host of maladies from tumors to premature cardiovascular disease. (Source: EurekAlert! - Cancer)
Source: EurekAlert! - Cancer - November 19, 2015 Category: Cancer & Oncology Source Type: news

Adding antiangiogenesis increases effectiveness of radiation against NF2-associated tumors
Treatment with antiangiogenesis drugs may improve the effectiveness of radiation treatment of nervous system tumors that interfere with the hearing of patients with the genetic disorder neurofibromatosis 2, investigators report. (Source: ScienceDaily Headlines)
Source: ScienceDaily Headlines - November 10, 2015 Category: Science Source Type: news

Khadija Khatoon with huge growths says she is 'happy to be made this way'
WARNING GRAPHIC CONTENT: Khadija Khatoon, from India, has severe distorted features, thought to be caused by neurofibromatosis, a genetic condition causing swellings or lumps (Source: the Mail online | Health)
Source: the Mail online | Health - November 6, 2015 Category: Consumer Health News Source Type: news

Predictors of Mortality in Neurofibromatosis 2Predictors of Mortality in Neurofibromatosis 2
This study examined the effects of a range of clinical and molecular genetic factors and their impact on outcome in patients with neurofibromatosis 2. Journal of Medical Genetics (Source: Medscape Today Headlines)
Source: Medscape Today Headlines - November 6, 2015 Category: Consumer Health News Tags: Pathology & Lab Medicine Journal Article Source Type: news

What Life Is Like With A Disfigured Face
(Photo: © Anthony Gerace) In a world obsessed with beauty, living with a facial disfigurement can be hard. Neil Steinberg explores the past and present to find out what it’s like to look different.“Take your ear off for me, please,” Rosie Seelaus says to Randy James, who is sitting on a black exam chair in a special room designed for viewing colors in the Craniofacial Center on the Near West Side of Chicago.He reaches up and detaches his right ear, which she created for him out of silicone seven years before. The ear is shabby, stained from skin oil and mottled by daily use. Viewed under various lig...
Source: Science - The Huffington Post - June 26, 2015 Category: Science Source Type: news

Mutations May Flag Conversion of Neurofibromas to MalignancyMutations May Flag Conversion of Neurofibromas to Malignancy
Mutations associated with the subset of benign neurofibromas that become malignant are seen as potential keys to a biomarker in patients with neurofibromatosis 1. Medscape Medical News (Source: Medscape Neurology and Neurosurgery Headlines)
Source: Medscape Neurology and Neurosurgery Headlines - May 14, 2015 Category: Neurology Tags: Neurology & Neurosurgery News Source Type: news

A new mouse model for the study of neurofibromatosis
(IDIBELL-Bellvitge Biomedical Research Institute) The research group of the neurofibromatosis of the Catalan Institute of Oncology, the Institute of Biomedical Research of Bellvitge and the Institute of Medicicina Predictive and Personalized Cancer has developed new mouse models for the study of principal malignant tumor associated with neurofibromatosis type 1. (Source: EurekAlert! - Cancer)
Source: EurekAlert! - Cancer - April 16, 2015 Category: Cancer & Oncology Source Type: news

Neurofibromatosis type 1 and attention deficit hyperactivity disorder: a case study and literature review - Miguel CS, Chaim-Avancini TM, Silva MA, Louzã MR.
BACKGROUND: The cognitive profile of children with neurofibromatosis type 1 (NF1) and attention deficit hyperactivity disorder (ADHD) has been well characterized, but few studies have evaluated the cognitive abilities of adults with NF1 and ADHD. O... (Source: SafetyLit: All (Unduplicated))
Source: SafetyLit: All (Unduplicated) - April 12, 2015 Category: Global & Universal Tags: Distraction, Fatigue, Chronobiology, Vigilance, Workload Source Type: news

Your NEJM Group Today: Segmental Neurofibromatosis Image, Humor vs. Straight-Forward Education, Washington IM opening (FREE)
By The Editors NEJM Group offers so many valuable resources for practicing clinicians. Here's what we chose for you today:NEJM Clinical … (Source: Physician's First Watch current issue)
Source: Physician's First Watch current issue - March 9, 2015 Category: Primary Care Source Type: news

Teenagers and young adults with neurofibromatosis type 1 are more likely to experience loneliness than siblings without the illness - Ejerskov C, Lasgaard M, Østergaard JR.
AIM: Our clinical observations raised concerns that teenagers and young people with neurofibromatosis type 1 (NF1) might feel lonely and we decided to investigate their experiences and compare them with unaffected siblings. We also assessed predictive fact... (Source: SafetyLit: All (Unduplicated))
Source: SafetyLit: All (Unduplicated) - February 5, 2015 Category: Global & Universal Tags: Age: Adolescents Source Type: news

Researchers identify a therapeutic strategy that may treat a childhood neurological disorder
UT Southwestern Medical Center researchers have identified a possible therapy to treat neurofibromatosis type 1 or NF1. (Source: UT Southwestern Medical Center News)
Source: UT Southwestern Medical Center News - December 16, 2014 Category: Hospital Management Source Type: news

Therapeutic strategy may treat childhood neurological disorder
A possible therapy to treat neurofibromatosis type 1 or NF1, a childhood neurological disease characterized by learning deficits and autism, has been discovered by scientists. "Children with neurofibromatosis have a high incidence of intellectual deficits and autism, syndromes that have been linked to the cerebellum and cortex," said the lead investigator. "Our findings in these mouse models suggest that despite embryonic loss of the gene, therapies after birth may be able to reverse some aspects of the disease." (Source: ScienceDaily Headlines)
Source: ScienceDaily Headlines - December 15, 2014 Category: Science Source Type: news