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The role of MEK inhibitors in treating NF1-related plexiform neurofibromas.
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The Children's Tumor Foundation's NF Forum is a national patient education and family gathering hosted in different cities across the United States. The NF Forum allows those living with NF, and their families, to connect, support, and learn from each other while attending seminars on relevant topics pertaining to neurofibromatosis. The NF Forum features NF experts from around the world will cover the most current information on NF including how to manage the symptoms of NF, information about clinical trials, and updates on treatment strategies.
To learn more go to:
https://www.ctf.org/get-involved/nf-forum
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36-year-old female with history of neurofibromatosis type 1 and hypothalamic glioma. Involving the inferior most aspects of the right and left hypothalami and extending to involve the infindibulum, there is a T2/FLAIR and T1-centrally hypointense, peripherally isointense bulbous mass with heterogeneous central enhancement. There is a small exophytic cystic component of the lesion which extends anteriorly and towards the left. The lesion is distinct form the posteriormost aspect of the optic chiasm. The last image demonstrates a subcutaneous neurofibroma in the left suboccipital region. Hypothalamic gliomas may or may not extend to involve the optic chiasm, and tend to occur in the setting of NF-1. Between 20-50% of those with hypothalamic-chiasmatic glioma have a family history of NF-1. Hypothalamic-chiasmatic gliomas in the setting of NF-1 tend to have a more indolent course, and may occasionally spontaneously regress. On histologic section, the lesions are juvenile pilocytic astrocytomas. Cystic change and enhancement are common. NMR223
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This video covers Neurofibromatosis type 1 and 2, their presentation, mnemonics to help remember them, investigations, treatments, complications and an MCQ at the end.
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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.
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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.


A video on my life with Neurofibromatosis type 1 (nf1) and chronic migraines, trying botox treatment, as well as an update about my diagnosis of pseudotumor cerebri. - â open for more! â -
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If you'd like to help me continue to make videos, please consider supporting me on Patreon: http://patreon.com/lilymeade
I know I might have scared you a bit with my Pseudotumor Cerebri video. Out of context, it seems like a very scary thing. It is, but I'm not really a stranger to seriously intense migraines and chronic pain. Neurofibromatosis is a genetic condition I've had since birth, so I have a lot of experience with it.
My videos on this channel are still mainly books, writing, and general fun stuff. I wanted to make this video for anyone out there who is scared about their own diagnosis or for anyone who wants to learn more.
I also believe that disability should not be so stigmatized, so it is important to show that my health may limit me somewhat, but I am still able to live an awesome life. Chronic pain or disabilities of any sort are just a limitation, they don't define a person.
Anyway, I hope you enjoyed or learned something from this video and I hope you stick around for more videos! Thanks for watching!
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My name is Lily Meade. I love books! I like to live a life inspired by fiction. I truly believe that anyone can find their own happy ending, whether in a book or in real life. I am an aspiring young adult author. I absolutely love to read (especially YA fiction, but I read adult and nonfiction, too!) and write (novels mostly). I really love storytelling in any form.
On my channel you will find a variety of videos about my life, writing (including writing updates as well as tips and tricks), novel research, book recommendations, and more! Iâm passionate about a lot of things and I like making friends. Thank you for watching my videos! Please say hello!
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Lily Meade
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