What is it really like to live with a condition like neurofibromatosis?

This video provides a window into a world that most people are unaware exists and is difficult to explain.

In partnership with Alexion, this video provides a small insight into life with NF1 and the ongoing burden of disease for both Grayson and his family.

The Children's Tumour Foundation is the only patient advocacy and support services for children, adults and their families in Australia. To learn more about us or the condition, go to www.ctf.org.au or follow us @ctfaustralia on Facebook and Instagram.

In this patient with a history of neurofibromatosis type I (NF1), there are numerous scattered foci of T2 FLAIR hyperintensity involving the subcortical white matter, corpus callosum, basal ganglia, and medial cerebellar hemispheres, many of which demonstrate mild enhancement. There is expansile T2 FLAIR hyperintensity involving the genu and splenium of the corpus callosum where there are areas of restricted diffusion. Findings are most compatible with multifocal gliomas and myelin vacuolization which are typically seen in preteen NF1 patients as was this patient. DB NMR 40

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25-year-old female with a history of neurofibromatosis type 1 (NF-1). There are numerous poorly circumscribed FLAIR-hyperintense lesion in the basal ganglia as well as the dentate nuclei region bilaterally. There is nodular enlargement of the optic chiasm and prechiasmatic segment of the optic nerve on the left. The enlarged optic nerve contacts but remains distinct from the infindibulum of the pituitary gland, as is demonstrated on the postcontrast images. The findings are compatible with an optic pathway glioma in the setting of NF-1. The patient also had numerous subcutaneous neurofibromas in the suboccipital region (not demonstrated on these images). NF-1 is also known as von Recklinghausen disease, which is the most common phakomatosis. 50% of cases are due to new mutations while the other half are due to inherited autosomal dominant mutations. To make the clinical diagnosis, two or more of the following are required: > 6 cafe au lait spots, 2+ neurofibromas or one plexiform neurofibroma, optic nerve glioma, osseous lesions (ribbon ribs, gracile bones, multiple non-ossifying fibromas, etc), sphenoid wing dysplasia, 2+ iris hamartomas (Lisch nodules), axillary or inguinal freckling and primary relative with NF-1. NMR204

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Kaleb H. Yohay, MD, provides insight on plexiform neurofibromas as they relate to neurofibromatosis type 1 and discusses tumor inoperability.

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Discussion of the paper 'Behaviour in children with neurofibromatosis type 1: cognition, executive function, attention, emotion, and social competence'.

Read the full paper: https://onlinelibrary.wiley.co....m/doi/full/10.1111/j

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DMCN Journal:
Developmental Medicine & Child Neurology (DMCN) has defined the field of paediatric neurology and childhood-onset neurodisability for over 60 years. It is a multidisciplinary journal, one of the world’s leading journals in the whole field of paediatrics. DMCN disseminates the latest clinical research results globally to enhance the care and improve the lives of disabled children and their families.

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Do you have a question about neurofibromatosis? Ask Kate! Kate Kelts, RN, BSN, is the Patient Support Coordinator for the Children's Tumor Foundation. Submit your question in the comments below, or email Kate at kkelts@ctf.org. Click here to subscribe, and click the bell so that you receive alerts when new videos are posted: https://www.youtube.com/user/ctforg?s...

To enable Closed Captioning, click the CC button. Note that CTF is not a medical center, and we cannot give direct medical advice. This video series is for informational purposes only, and is not a replacement for diagnostic or medical care.

The latest installment of my syndrome series! This collection of videos highlights some of the major syndromes that affect the head and neck.

Neurofibromatosis Type 1 is diagnosed based on the observation of 2 or more of the following features: 6 or more café au lait macules that are 5 mm or more before puberty, 15mm after puberty, two or more neurofibromas or a plexiform neurofibroma, freckling of the armpit or groin, optic pathway glioma, two or more Lisch nodules of the iris, bony changes associated with the syndrome, or a relative with the syndrome.

This video discusses the genetic, clinical, radiographic, and histopathologic findings of the syndrome.

Make sure you subscribe so that you don't miss any future videos! This channel discusses clinical oral pathology, histopathology, and so much more. Stay tuned!

The views expressed on this channel are entirely my own and do not represent any organization for which I am employed or a member. The content of this channel is intended for educational use only and not intended to serve as medical advice. If you have a concern about your oral health, please consult your oral healthcare provider for a thorough head and neck examination.

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Title: Ophthalmological Manifestations of Neurofibromatosis type 1
Presenter: Ligia Onofrel
Affiliation: University of Utah Neurology Resident
Date: 4/24/2013
From Moran CORE Collection: http://morancore.utah.edu

Aidan and his guest Dan are both visibly affected with neurofibromatosis type 1. They talk about being stared at, looked at, and sometimes singled out because of the way NF1 affects them.

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