Ask Kate: When to Worry About These Common NF1 Symptoms
Вставка
- Опубліковано 30 вер 2024
- "What are we supposed to worry about?" Recently Kate spoke with a Father whose child was newly diagnosed with NF1 and this was his primary question. In this video, Kate reviews three common manifestations of NF1 that generally are not a sign of a more serious issue: freckling, large head size, and lisch nodules.
To enable Closed Captioning, click the CC button.
What is the Children's Tumor Foundation?
Children’s Tumor Foundation (CTF) began as the first grassroots organization solely dedicated to finding treatments for NF. Today, CTF is a highly recognized global nonprofit foundation, the leading force in the fight to end NF, and a model for other innovative research endeavors.
Visit our website at www.ctf.org/
Donate today at www.ctf.org/wa...
Follow us on our social media platforms:
Facebook - / childrenstumor
Instagram - / childrenstumor
Twitter - / childrenstumor
LinkedIn - / children's-tumor-found...
#endnf #nf1 #nf2 #nf2swn #swn #childrenstumor #neurofibromatosis #schwannomatosis #nervetumor #tumor
When my daughter was born I thought her big cafe' au lait marks was caused by a treatment I had when I was pregnant with her because they looked like finger marks. Then when the freckling started showing around her neck I tried to wash then off thinking she had a dirty neck. Doctor told me what they were and said there was nothing we could do because it was a genetic disorder that had no treatment. That was in Maine in 1990. She was diagnosed in her teens when tumors started showing up.
Oh hey Mama! 👋🏻 I was like this sounds awfully familiar 🤣 and I saw your name, and then I saw Maine 1990... and was like YUP this is a comment about ME!
@@josiebyron9596Lol. Love to see family connecting in the comments.
Does your child has other symptoms rather than dirty neck and spot
May I ask how she is doing now? Are there more tumors now?
I have had all these symptoms since I was little and will not go to treatment. I forget that I have this autoimmune disease and am super dead after work sometimes the pain is so bad that I can't get back up for a few hours or so and have to realign my ways of getting up because I choose to sleep on a hard floor so I can feel the most support.
Hi! Thank you so much for taking the time to post, it’s extremely helpful and reassuring. I wanted to ask you if there are any cosmetic treatments for facial cafe au lait spots. I do not know if my son will ever be bother by them, but if he is, is there a way to remove them?
Hello, thank you for this question. There are currently no treatments to remove or lighten CALS. If any product says that it can, please be skeptical.
I have NF1 and my eyes were darker green but my Lish nodules cover all the green and they have been completly brown since I was young.
Hi Kate, as always, interesting and informative. Thank You!
Hi maam i am also suffering from Neurofibromatosis iam not feel weel feel bad not comfortable my self
Can the Nf1 symptoms be real mild? Like I have these little clear bumps on my hands mostly, and had a meningioma removed this year. I heard NF1 causes meningiomas too. I also have high blood pressure which I think is another symptom of NF1
That’s why baseball cap don’t fit me 😞
Hi Kate, my daughter is 6 years old with NF1. Please make a video about brainstem gliomas. This showed in my daughters MRI. Thank you very much.
Thank you for the suggestion, I will add it to my list of topics to record.
@@katekeltsctf9274 Thank you very much 🥰
My granddaughter has nf1
How can I reach out to you my 5 month old has it
Where can I go in Southen California to get genetic testing for myself and my autistic grown son?
Hi Monica - for a list of doctors and geneticists who know about NF, you can go to www.ctf.org/doctor
🙏🏼
Hello kate my name is ken myke l read on a wed sight there is meds for nf1 and nf2 so l am wondering about the meds what does the meds do and how can l prove l am in pain do to nf1 and nf2
Hello Ken! Thank you for watching and asking this question. Currently, the only FDA-approved treatment for NF is Koselugo (Selumetinib). This is a MEK-Inhibitor approved to treat inoperable Plexiform Neurofibromas in children 2-18 years old with NF1. I will add some helpful links below.
About MEK: chrome-extension://efaidnbmnnnibpcajpcglclefindmkaj/www.ctf.org/wp-content/uploads/2023/11/MEK_Inhibitors_Brochure.pdf
Can you please tell me your email my seven month old is diagnosed with NF1 and I am new to this has so many questions and worries
Hello! I tried to post it but apparently UA-cam does not allow sharing an email address in the standard format so I will post it like this: kkelts[at]ctf[dot]org.
My baby also diagnosed with nf1 I have so many things to ask about
You can reach out to Kate at kkelts@ctf.org
Hi there, can you please tell me her symptoms, thanks 😊
Kate, do you have NF1? or do you have a child with NF1? my daughter is 24 with Nf1. farily mild case, she does has optic nerve gliomas, but they stabilized- and are not causing problems, or growing. Thank goodness.
At what age did the optic nerve gliomas develop? If you don't mind me asking
@Brenda E is they anything we should not eat if we have NF1 did ur daughter Dr said anything they NF1 person should not eat
Hi Brenda - just saw this question, I apologize for the delay. I do not have NF, nor do I have a child affected by NF. I started working with the NF community in 2006 and have never left. It is a wonderful community!
@@madihaafreen23 No, there are no dietary restrictions for someone diagnosed with NF1.
Thank you so much for your continued information and 💗